Jennifer (Miss Misophonia) - From sibling triggers to global advocacy
Transcript
Adeel [0:00]: Welcome to the Misophonia Podcast. You're listening to Season 3, Episode 5. My name's Adeel Ahmad, and I have Misophonia. This week, I'm very excited to bring you my conversation with Jennifer, otherwise known to many of you as Miss Misophonia. She's often seen on her popular and informative Instagram and YouTube accounts under that name. Please hit the links in the show notes to check them out. We talk about themes she's seeing in her advocacy, in the questions and feedback she gets, her coping mechanisms and how they've evolved over the years. And we get to hear a bit about the book she's writing on misophonia. So very exciting. A couple quick notes. The 2021 Misophonia Research Fund has opened their request for proposals. So if you're a researcher looking at Misophonia, please find info on applying at their website, misophoniaresearchfund.org. Also want to give a quick shout out to Nature In Design Landscaping, a misophone-owned business in Pennsylvania. Matt Gruber says he turned his hobby into a career, in part because it helps him deal with triggers. He provides residential landscaping and hardscaping. So if you're in Pennsylvania, please check it out. Links are at misolist.com, M-I-S-O-L-I-S-T. If you are at a business owned or employed or is employing misophones, we all want to know. So go to misolist.com and hit the add button. Now, here is my conversation with Jennifer, Miss Misophonia. All right. Well, great. Well, this is exciting. Jennifer, good to have you. Good to have you in the podcast. Good to finally have you. I've been hoping to talk to you for a while. Welcome.
Miss [1:53]: Thank you so much. It's a pleasure to be here.
Adeel [1:56]: So, yeah, a lot of the listeners are used to kind of hearing about, you know, kind of where around you're located. We got people around the world. Yeah. Whereabouts are you, Jennifer?
Miss [2:08]: So I am in the US and my more specific location is a little bit up for grabs at the moment. I'm kind of in between Seattle and South Carolina at the moment.
Adeel [2:19]: Gotcha. Okay. And so are you in school? Are you working?
Miss [2:23]: I am neither. I have a master's degree and I am mostly freelancing. I'm one of the many unlucky who lost their job during this COVID-19 disaster.
Adeel [2:37]: Yeah, disaster just keeps rolling and snowballing. Yeah. And what kind of, do you mind asking, like, do you want me to ask what kind of work you're doing?
Miss [2:47]: Yeah, absolutely. So, well, with freelancing, primarily I'm doing a lot of nonprofit development and marketing. That's what I was doing before I was working with the Leukemia Lymphoma Society and health resource partners. So I work in nonprofit development, nonprofit marketing, and that kind of area. So mostly just doing that right now for smaller contracts.
Adeel [3:12]: Gotcha. And as a freelancer, were you even before COVID doing that maybe remotely working from home independently?
Miss [3:23]: I wasn't freelance before. I was actually working in an office full time for the Leukemia Lymphoma Society. Gotcha.
Adeel [3:31]: Okay. Okay. Great. Okay. So, yeah, so I guess there's a lot of things we can cover. Why don't we talk about, let's go back to the, I guess, let's make the origin story, like, you know. misophonia for you when did you first notice you started having it and then we can kind of get into all the uh community stuff you've been you've been working on but yeah i'd love to hear kind of like where it's all started for you as far as you can remember at least for sure um so i think my story is is kind of interesting in that um
Miss [4:04]: Misophonia for me kind of actually started, I would say, with my brother. So my brother started kind of developing symptoms of misophonia. We were really close in age. We're only a year apart. We spent a lot of time together, notably. you know, after school every day, we'd sit in the same kind of closed space room to do our work together. And he would always notice certain sounds that I would do and point them out and get really frustrated. And I started to pick up on them and started to get frustrated by those same sounds. And somewhere along the line, I started to hyper notice those sounds kind of more than he did and started to notice them more and more outside of that small space that we spent time in. and somewhere along the line he lost track of those sounds and I just went crazy with them and I started to notice more and more sounds in school and in cars and at the ballet you know everywhere we went I just started being triggered by sounds and I don't think we we knew what it was until I was even in college actually So, yeah.
Adeel [5:12]: Yeah. Do you know around what age was that when he started picking up on those sounds? And is he younger or older?
Miss [5:19]: He is one year older. It was somewhere between seven and eight that we started to... notice those sounds. So he was maybe eight. I was probably around seven. And I probably started to get pretty significant misophonia around the age of eight or nine. And it started to actually impact me in school around 10, I would say.
Adeel [5:44]: Got it. Okay. Yeah. This is really interesting because obviously, you know, a question that comes up is like, can you get it from other people or can it kind of transfer? Like somebody points it out a lot. Can you pick up on it? And cause that's, you know, that's a bit of a fear with, with people, with people on their own, but also those who have kids, it's like, am I going to transfer it if I start talking about it too much? And so there's always a, always a debate about that. Actually, yeah, why don't we kind of zooming in on that. What do you think about that based on your experience and kind of what you've learned over the years? Do you feel like that was, I don't know, hereditary or passed on through observation? Yes. I'm sure you have some thoughts there.
Miss [6:28]: I do. So I have multiple kind of parts to this. So the first part to that is actually that I believe that our father actually does have misophonia. I don't believe that he experiences it in a very extreme way. But our whole lives, he had very specific trigger sounds that he was always on top of, always very persistent about, you know, you can't scrape your teeth on the fork. you can't chew with your mouth open and if you do he would get very agitated very quickly these types of things from a very very young age and so those things were instilled in us very young we started noticing those sounds very very young and i think um that that kind of repetition and and attunement to noticing those sounds um trained ourselves and our brains to notice them in turn right and then we do know that there is some kind of genetic component to misophonia right so we know that there you know you can get a test on 23andme and find um you know that there's a genetic sequence that people with misophonia have that people without misophonia don't have. Right. We don't know a further explanation for it. We haven't dug into that further, but we know that that exists and I have it. I've been tested. I've not convinced my father to be tested for it yet. So but I'm convinced I'm so sure if he got tested, he would have it. And funny enough, my brother doesn't. And so where I think that falls is, you know, his sensitivity to those sounds was learned. It was a learned behavior from Our experience growing up in that hypersensitive environment. And then, you know, we both learned it. And then mine developed further as a result of having that kind of genetic predisposition. Whereas his, he grew out of because he didn't have the genetic predisposition, if that makes sense.
Adeel [8:35]: Yeah, no, that's something I think about. It's not a clear-cut genetic versus, it's not a clear-cut nurture versus nature, but the nature can definitely, it seems like it's definitely, wait, no, the nurture can definitely reinforce the nature.
Miss [8:51]: Absolutely, yeah.
Adeel [8:52]: Which is what I think you're thinking about in your case, whereas, yeah, I mean, if you're, your brother if both of you are around um a parent who's constantly um kind of in leaving that instilling that into your into your heads uh obviously um you know you'll both pick up on it but maybe one of you is kind of left with a lifelong um condition which which i think is your case How about your poor mother who was living with all of these misophones?
Miss [9:20]: I know, the poor woman. She's such a saint. She has absolutely no symptoms of misophonia. I mean, understands it to the extent that she really feels sympathy for us. and for me in particular, but does not understand in the way that, you know, chewing noises don't annoy her. The noises that trigger me, she's like, I don't even hear it. What are you talking about? Yeah.
Adeel [9:46]: What were some of the things that she did to kind of accommodate you guys, just if you remember a few things?
Miss [9:54]: Oh, so it's really funny because, and I think that, you know, this is something I would love to talk about actually in my growing up. I think it's really important and something that I currently advocate for on my page is that because misophonia is so... poorly known and understand and when i was growing up we did not know what it was it wasn't accommodated for in my life it was kind of viewed as i need to learn how to control myself i'm a child who's out of control i'm a child who is acting poorly or seeking attention and so i need to accommodate and and work around and control myself better rather than i'm a child who is clearly struggling with something and we need to figure that out so there weren't any accommodations made as a child um i was actually i was sent to a psychiatrist and he figured that i had um a phobia of certain sounds which is a clear misdiagnosis now um and as a result of that he you know put me into exposure therapy where i had to sit for 30 minutes a day and listen to a recorded tape of my family members making a list of the triggered sounds, you know, and, you know, now we have studies that say that, well, actually that can result in causing more symptoms of misophonia. So that's wonderful.
Adeel [11:22]: So your family, so he had your family make a, make an audio tape of themselves making sense. Oh my.
Miss [11:28]: yeah and this was before you know recording devices weren't very regular like it was a really expensive thing for my family to go out and buy a recording device so they went out and spent you know like 120 dollars oh they went to like some recording studio just to buy a recording device to record themselves making these like torturous sounds for me to sit in a room and listen to Yeah. Yeah.
Adeel [11:53]: And so, and so flipping the, oh yeah, actually, I don't, yeah. Well, I was curious, flipping that around, you know, if no one is making accommodations for you, what were some of the things that you learned to do to try to cope at that, at that young age?
Miss [12:08]: I think one of the more natural coping mechanisms that I've seen people with misophonia come up with on their own, even without interacting with other people with misophonia, is mimicking. I think it's just, it's so inherent, it seems, which is, you know, it's where you, of course, you mimic back the sound that someone is making. and when you're young that can be really cathartic and really helpful i think it's it's a great coping mechanism when you're young and it doesn't necessarily translate well when you're an adult right it's not ideal to be sitting in a meeting and you're triggered and you just start smacking your lips at the person doing it back at you right so i think my number one trick like coping mechanism was was uh mimicking and even at that age you know i remember sitting in i think i was in my fifth grade class and my my teacher chewed gum while she taught and so i started mimicking by chewing on one of my pins really loudly and two of my classmates kind of figured out what I was doing to some extent. I don't think they knew why or, you know, any deeper meaning, but they thought it was funny to then start smacking their lips very loudly. So that one really backfired on me. You know, so I think it gets really hard when you don't have any idea of coping mechanisms. And so that's one of the things, again, that I'm trying to teach now for younger generations and for parents and even for people our age and older is coping mechanisms.
Adeel [13:45]: Yeah, it's not weird that that's that's mimicking is like an inherent and seems inherent and natural when it's almost paradoxical. If you think about it, like, why would you, you know, somebody who's why do people jump to that? But it works. You're right. I mean, it comes up in like almost every interview I have. So.
Miss [14:01]: I know it's so curious. I would love for some psychologist somewhere to, to do the research and tell me why that is.
Adeel [14:07]: After they figured out the cure for misophonia. Yes. Priorities. So, um, yeah, so, uh, you know, you hit on something I always ask too, is like, how, when did it, or how, if, and how did it affect you in school? Did it start to kind of drag on your grades or socially, or maybe a little bit of both?
Miss [14:29]: Yeah, so I think the earliest school impact I remember is fifth grade, just because I very vividly remember that teacher who chewed in class. Yeah. And then, you know, it certainly carried through college. It carried through graduate school. I learned how to accommodate myself and figure out my own kind of private coping mechanisms to get through it. um there were points at which i mean there was a point in graduate school where i i almost got kicked out because they they thought i was cheating i had headphones in um in class and it was because i had to have white noise in or i couldn't i couldn't focus and i was doing school in a foreign country where they don't have disability services and I couldn't go to them and say, hi, I have a disability, here's my waiver form and here's why and what I do for this disability. And so instead, I just privately accommodated myself. I had my white noise with me and I kept my phone underneath my legs, face down. I just had the white noise. I could hear and interact. I always was engaged in class. I can speak through it. I can hear everything. It just locks out. kind of the um classroom noises that can be distracting but i i mean i had to get called before a review board it was a whole ordeal so certainly it has been difficult to say the least what did you what did you tell the review board that seems like uh you know kind of like the climax of a movie about misophonia that you pulled in front of review board Yeah, I mean, I did. I had to be completely honest. And I think that that was probably, that was, I think, the moment that I decided I had to start being really open and honest about misophonia. And shortly thereafter is when I started my Instagram page. I had never been so open and honest about misophonia. I'd always been very deeply ashamed of it, which is not something that you should be ashamed of. If you're listening to this, please don't be ashamed of it. I know it feels like you should be. Because it feels, I know it feels shameful to some level because it is, it's unknown and it's rare and it's weird. But yeah, I just, I had to sit down in front of, you know, 12 people, all of whom didn't speak my language as the first language and explain this incredibly weird, rare disorder. Yeah. had to call in, you know, I had to call my my psychiatrist from the U.S. and have them Skype in and like talk to that. You know, it was it was a whole.
Adeel [17:05]: That's fascinating. I haven't heard that before. That's really interesting. Good for you for going through that. I can totally see how that could be a turning point where you're like, all right, we're done with this stigma.
Miss [17:20]: Let's change some minds.
Adeel [17:27]: Interesting. Okay. So, yeah, so I guess let's talk about, yeah, there's a bunch of things I want to get back to on like, you know, friends in school, whatever. But I'd love to start to talk about your Instagram page and kind of how your advocacy kind of started and evolved.
Miss [17:44]: Absolutely. Yeah. So I think the, the trigger point was exactly what I said was just that I, you know, I nearly got kicked out of graduate school because I was trying to, you know, protect myself one from misophonia, but two from having to talk about misophonia. And, and that was just, that's, that's horrendous. You know, it's already hard enough having to live with misophonia and protect ourselves living with misophonia, but having to also, not talk about misophonia is it's just not fair it's not right and it's not okay to do to ourselves and so that was the jumping off point and I think you know somewhere along the line I started the Instagram and I thought no one's gonna like this is so weird no one's gonna follow it there's not enough people out there with with misophonia like no one's gonna relate to this And then, I don't know, more and more people started following and started, you know, messaging me. Oh my gosh, this is so relatable. Oh my gosh, thank you so much. And it really encouraged me. The more messages that I get, and still to this day, I get messages, you know, every day from people saying, oh my gosh, this is so relieving. Oh my gosh, thank you for saying this and being here and doing this. And It is so validating for me to hear that because I know that I was where they were not too long ago. And I know how horrendous it feels to not know what's going on with you, to know what's going on with you and not know how to say it, to not have anyone to talk to, to not have the support of your family, to be struggling through school because of it, whatever it might be, and just not have a community to talk to relate to and support you through it. And so that's kind of where this came from.
Adeel [19:33]: Yeah, I mean, I know lots of people appreciate what you've done. And I've noticed that it's not just people are following Misophonia accounts, but I'm noticing more and more people are creating their own Misophonia accounts to get the word out. That seems to be, yeah, every week or, yeah, I feel like there's a new account.
Miss [19:51]: Absolutely, I'm seeing more and more Misophonia advocacy accounts and I love it.
Adeel [19:56]: I love it. I'm sure in no small part to, you know, the kind of work you've been doing. So that's great. And so and you're I mean, you know, most people, including myself, we just like, you know, post like pretty simple links to things or memes or whatnot. But you actually, you know, yours involve video and seem quite relatively well produced and are very informative. Is there kind of a strategy there? How do you get ideas for your topics? Or is it just kind of like what you've been thinking about this week is kind of what you share with people? Or maybe it's feedback from people who are contacting you.
Miss [20:37]: Yeah, so it started out definitely just whatever was on my mind that week and kind of, it came very much from, you know, I'm a 26-year-old woman now and I would sit and think, what did I want to know when I was 16 and struggling with misophonia? What did I need to know to help me get through it that day or that week at 16? And then it started to come from the feedback, from the messages. There was one week I got an influx of like 200 questions from different people. And I'm still working through all of those. So that definitely...
Adeel [21:13]: Yeah, I think whenever you toss up those Instagram story questions, it seems like you probably get a flood.
Miss [21:19]: I do, and I love it. It's overwhelming. So if anyone from Instagram is listening to this, please know I'm still getting to your questions, I promise. It can be very overwhelming. And also, it's a daunting task to answer those questions for you guys because I don't want to answer them incorrectly. You know, I get... I get a broad range of questions and some of them can be just very straightforward. Like, you know, what is misophonia? Give me a definition to, you know, how do I deal with this situation with X, Y, Z factors? And, you know, it's all very subjective and.
Adeel [21:58]: Well, you know, I think anything helps. And like, you know, like we know there's not, there's not much research, so we have to fill in the gaps. And I think people appreciate that you're somebody who's, you know, had it for a while, thought about it for a long time. And yeah, I mean, everything you've been doing is I'm sure very appreciated by, by people listening and is helping folks. Great. Um, yeah. And so, um, okay. So you, so you, yeah, you have, you have that going in your, um, and what are some of the common themes I guess you're seeing in, in, uh, what, what people are asking you about?
Miss [22:34]: I think the number one theme, honestly, is how do I cope? Well, yeah, actually, well, how I cope, but I would say maybe even tied with that is how do I tell the people that I love that I have misophonia? I think that there just are so many people out there who have misophonia and don't know how to talk about it or are ashamed to talk about it. And I think I'm still really working on... getting that down even for myself you know I if I can share a personal story I you know I went on a first date this week and I gave myself the task of on the first date explaining misophonia just as a a way of kind of testing myself can I do it and and it was difficult you know it is not It's not an easy thing to do to explain, one, a kind of rare and poorly defined and not well-known disorder, but two, to lay it out there for someone and feel very vulnerable.
Adeel [23:39]: um so yeah so at what point uh have you thought about like at one point do you do you share that is it like uh you know um after the first bite of dinner or something or is it uh you know afterwards when you're like you know your face is turned blue i'm jennifer i have a rare disorder no um we'll only eat certain cuisines yeah
Miss [24:02]: Exactly. Yes. You know, when you're introducing all of your other allergies, you know. So I think, yeah, I have thought about this actually pretty extensively when, you know, with relationships at least, you know, I'm more recently. dating and single. So when I've thought about this more extensively with like actual, you know, if you're in a relationship or you're in a newer relationship, you know, I would introduce it typically when you start to get comfortable with that person, like even if it's a friendship, I'm not just talking romantic relationships. I'm talking, you know, a new friendship, a new relationship, a new person in your life. When you know that you can have open conversations with that person, when you know that you can set down time with them and you can sit comfortably and say, I'd like to share something that's really important to me, it's something that really makes me feel vulnerable and, you know, I really need to open up about and I'd really love for you to feel comfortable asking me questions and you can both set aside the time to sit with it and have a real conversation. that's when you have that conversation. And that time might be different for everybody. You know, for me, who's someone who is ridiculously open, it's probably the first time I meet you, but for others, it might be four months in, you know?
Adeel [25:22]: Right. And what are, do you mind if I ask what reaction you got this week?
Miss [25:27]: Yeah, absolutely. Actually, he was very interested in understanding. He, you know, he was like, wow, that's super interesting. And I told him all about, you know, what I'm doing with it. And I told him I'm actually, you know, I'm trying to write a book about misophonia and what I'm doing with it. And he was super intrigued and interested and wanted to know more about misophonia and actually asked me investigative questions, which was really, really cool.
Adeel [25:54]: Yeah, very cool. Okay. Yeah. Yeah. You know, when I, yeah, with me, I noticed that, you know, if I'm making friends with people and we're, you know, we're, you know, to the point where we're kind of comfortable, it's like... it's almost like if i explain it it's almost like they're because they're used to but at that point like i've been joking around with them for for a while every time we hang out and uh usually if i if i bring that up i can't it's like i can't bring it up in a way that they don't think i'm joking it's because i'm you don't have to be joking about in general so it's just like okay how do i pivot this back to actually know this is quite a serious situation.
Miss [26:33]: Yeah.
Adeel [26:33]: I don't, I don't know how to, yeah. I don't know how to turn it off. So sometimes, yeah, it's just kind of weird to break the awkwardness. I kind of turn on the joking even more. So it just.
Miss [26:42]: Right. Absolutely. I think, I don't know. I, I totally understand that. And especially when you're a person who. kind of, you know, like my number one go-to is.
Adeel [26:52]: You're very extroverted.
Miss [26:53]: I am very extroverted. My, my go-to is, you know, sarcasm and kind of dark humor. So certainly that could be mistaken. So I, I don't know, it depends on how comfortable you are, but I definitely, when I'm trying to talk about misophonia, I set it aside as like its own conversation. Like before I even walk into the situation, I'd say like, this is going to be a conversation that like, is a little heavier and I'd like to like, let's set aside 30 minutes to have that conversation. And then after that, we can have joking and funny and we can switch back. But like very seriously, this is something that's important to me and I really wanna have that conversation with you.
Adeel [27:33]: Yeah, just be very intentional about it.
Miss [27:35]: Yeah.
Adeel [27:36]: Interesting. Do you want to, yeah, you're kind of helping me guide this conversation and you mentioned a book and I'd love to hear more about that if you're ready to kind of reveal anything about this. Yeah.
Miss [27:49]: Yeah, no, it's not a secret. And it's also definitely not coming out anytime soon. It's been something that I've been playing with for, you know, probably two years since kind of since my grand issue with the grand jury of graduate school. I wanted to write an advocacy book for me, Siphonia. And so I've been toying with kind of two ideas for it and written maybe... maybe a hundred pages. But as of now, it's more so kind of a dummy survival guide for Mustafonia rather than an advocacy book. And that's more just kind of from what has been going on with my Instagram has kind of translated into my book more than anything. So more of the, you know, how do I deal with this? Here's, you know, some answers to that has become what the book has become about. And rather than what I had intended it to be, which was more of like a my life story and advocacy. And I'm not sure if I want to change it. I think I really like the idea of it being kind of a survival guide. So we'll see. I don't know. If anyone has input, if anyone has an interest in which one it should be, reach out.
Adeel [29:10]: Yeah, exactly. Yeah, we'll have all the links for you in the show notes. But I think, yeah, there's definitely a space for, well, space for any kind of angle in the misophonia literature, popular literature. So I'm totally visualizing, I'm already visualizing this and, you know, walking into Barnes & Noble and seeing this right on one of the bestseller. Oh, let's hope.
Miss [29:32]: Fingers crossed.
Adeel [29:35]: you know there's gonna be a bunch of people who'd grab it and kind of like um because they know they have it and sneak into a corner and be like oh yeah yeah yeah oh yeah secretly though because i mean yeah well the other thing is they're probably uh going into barnes noble to escape their family in the mall you know oh absolutely that's that's where we like to hang out in the art art section of the barnes noble Probably not from personal experience, but.
Miss [29:59]: Absolutely. Mine too. I cannot tell you how many days and hours I spent curled up in a corner of Barnes and Noble. And I miss those days. It's not a thing we can do anymore.
Adeel [30:08]: Oh, right. Yeah. Well, cool. So, yeah, let's yeah, maybe let's talk about some of your other. Actually, you know, I do want to go back a little bit to kind of like to hear about kind of how your maybe how your friends have, you know, not as a relationship, but kind of over the year, how your friends have treated this. Because I've heard a lot of people say, you know, some of their friends have become, you know, they're super advocates for them and really protecting them. Others have kind of like had, you know, maybe less good situations. And it's kind of really shaped kind of their friendships and their social circles. I'm curious if, you know, if this has really shaped your social circles as you've grown up.
Miss [30:54]: Yeah, so like I said, I didn't even talk about or share the fact that I had misophonia until a couple of years ago.
Adeel [31:03]: Oh, at all. So he was totally bottled up.
Miss [31:06]: I guess to finish my kind of origin story, I didn't know the word misophonia until, you know, maybe my second or third year of college. My brother was scrolling through Reddit and found like a subreddit talking about misophonia. And he messaged our family group chat and he was like, guys, I think that this is what's wrong with Jennifer. and of course we all and me circa 19 yeah yeah yeah and we all researched it and we were all like oh my god but i got over this here's the thing i got over yeah exactly yeah um so that's how we even found out about it and then all of a sudden of course my family were like oh my god we're so sorry like we wrote you off all this time and you actually have a real thing like you're not crazy and then of course they became you know advocates and supportive so there was definitely a switch in my family and in my personal experience with misophonia
Adeel [32:03]: Well, that's great because I've heard, you know, I've heard people mention to the families and it's like sometimes it's crickets. Other times it's like, you know, just the joking kind of continues. And so, yeah, that's great that everything kind of turned at that point. That must have been a relief.
Miss [32:20]: And to be fair, it wasn't like a flip of a switch. And even actually, my mom and my brother were the first people to be like, it's definitely this. I was very hesitant. I had been so convinced for so long that I was just kind of crazy. That I was like, yeah, yeah, whatever. Like, that's a valid thing, but it's not what I have. I'm just crazy. And so for months I was like, yeah, yeah, whatever. And my mom was like, no, I really think. And she kept researching. My mom's a physician. So she started reaching out and like doing her research. My brother was like, I'm convinced. My dad was like, yeah, yeah, okay, whatever. But he's not super invested, you know. and they started to convince me and started getting me more and more involved in it so it was it was a process for sure to kind of kind of undo those years of convincing me that i was just kind of an absurd crazy child
Adeel [33:12]: Okay, so that's kind of unique that you didn't, yeah, it took a while for them to convince you because usually it's the other way around. Interesting, okay. Do you have any, yeah, I mean, did you have any other, and you don't have to get into your pre-existing or parallel conditions, but did you have any other, you know, conditions that maybe you were... thinking that it was... A lot of people have anxiety.
Miss [33:36]: Yeah, no, so I do... I mean, I have depression and anxiety pre-existing, but no, there wasn't anything else that I thought it was. I just very genuinely thought that I was just... weird and different and crazy. I honestly, from a, from a really young age, especially like with misophonia, I convinced myself kind of internally. I never said it to my family. I was like, I'm just going to be one of those people who's going to end up in a psych ward because my parents keep telling me I'm crazy. So therefore I must be crazy. Like I must be really actually crazy. And of course, you know, I'm not like, I don't have any type of psychosis or, you know, I'm very lucky. I don't have any type of, you know, I don't want to say severe mental illness, but I don't have any type of severe mental illness that would cause me to do so. But from a young age, that's just kind of what I imagined. And so I was very hesitant to kind of accept, I guess, a diagnosis of misophonia because it seemed too banal, I guess, to what I expected, if that makes sense.
Adeel [34:42]: yeah no no yeah absolutely um yeah we you know we all think it's yeah because most of us go through our lives not knowing what it is and so we you know assign our own interpretations of what it might be based on our based on our personality um and uh yeah and so yeah i mean yeah i i bottled things like i had no idea what it was i just thought i was annoyed at uh uh certain people and uh and that's what it was um and so yeah so yeah before you knew what it was um what were some of the things were you like a in terms of fight or flight um were you more like most people are end up being more on the flight side like what did you uh
Miss [35:25]: doing situations did you avoid situations did you have an escape route and always ran out always had headphones it seems like you always had headphones at graduate school by that point the headphones are definitely um a development since finding out about misophonia i would say um okay i i think as a as a young young child so probably like seven to twelve My response varied between situations. So, like, at home, my response was, like, anger and lashing out. I would, like, throw things. I remember I was, like, trapped in the car, and my parents would listen to NPR, and that was a huge trigger for me. And I just remember I had, like, this big chunky boot on, and I kicked the back of the chair and just shattered it. It was, like, cheap plastic, and it just, like, shattered.
Adeel [36:11]: Yeah, NPR needs to chill out on their – they need to change some of their microphones.
Miss [36:16]: Come on, man. They – npr man they're they're not doing it um yeah so and then in versus like in class where you know you can't escape and you also can't just lash out i would just sit there and cry i just like sit in the back and cry um or i'd like plug my ears super hard to the point where like sometimes i would actually cause blisters or bleeding um You know, I really didn't have any great coping mechanisms. I couldn't escape. I couldn't, you know, run away. So there was a lot of lashing out. There was a lot of anger. As I got older, you know, teenage years, there was a lot of just like yelling, a lot of screaming, and a lot of, yeah, stomping away, running away angrily.
Adeel [36:59]: At home with your family.
Miss [37:01]: At home with family. Yeah, never in public, never socially. Like I definitely always followed kind of the social constraints of how you're supposed to act, right? Which I think... It's both, you know, it's good and it's healthy for, you know, like socially and also not necessarily healthy for yourself. And that's something I talk about more in the book as well. Just kind of the constraints of following the social order, but also trying to be protective and smart about your own mental health.
Adeel [37:40]: Yeah, because, I mean, the condition doesn't go away when you're out with friends, but yet you have to act completely differently.
Miss [37:47]: Exactly.
Adeel [37:47]: And so, yeah, which one is healthier? Right.
Miss [37:53]: And it's hard because, you know, being a social, humans are social beings, and unless you have some other preexisting condition, you know, you have, like, let's say autism as well, where you aren't comfortable or don't want to be around other persons, you kind of need that social interaction. And so it is really important that you are following certain social constraints so that you can continue to be a part of those social interactions. But it's also really important to protect your mental health and your wellbeing. So yeah, it's something I'm still trying to put into words carefully for the book, but when I figure out how to say it nicely, I will let you know.
Adeel [38:33]: Yeah, yeah. And you brought up another thing. Autism is something I get asked about a lot. Is there some kind of overlap? I've had people tell me that people have told them that they might be on the spectrum or whatnot. Do you have any thoughts about that? I'll preface it by saying there's not enough research on any link between autism and misophonia. There hasn't been found to be anything, but I'm sure it's come up in questions and conversations. Curious what you think about that.
Miss [39:06]: Yeah, so I will preface by saying that I'm obviously not a licensed medical practitioner nor a licensed mental health practitioner. So I don't have any type of scientific knowledge of it. But as of my understanding, autism and misophonia are not... linked in any way other than that you could possibly have both um misophonia is you know very specifically linked to um kind of uh misophonia is specifically linked to having um extra myelination in a specific part of the brain so the ventro the ventromedial prefrontal cortex has like hyper myelination, whereas autism is like a whole different specific set of other physiological issues, not issues, physiological differences. And so the research doesn't show any links between the two. And I haven't seen personally any links between the two. I don't believe as of now that there are any links between autism and misophonia other than that people with autism do have hypersensitivity to sounds, but not in the same way as misophonia, if that makes sense. Like autism, the hypersensitivity, it tends to be more like sensory overload, whereas misophonia is truly hypersensitivity. It's not sensory overload. It's not like noises are too loud in general. It's specific noises that we can't unfocus.
Adeel [40:53]: Yeah, I mean, I think that's right. I mean, there doesn't seem to be a link, or at least there hasn't been one that's been identified yet, but there are behaviors that seem familiar between the two, and that's why the question probably comes up. Right, exactly. And that reminds me of, you know, I've noticed that there's this kind of spike in the number of, like... events uh like sensory processing nights at a grocery store or at a children's theater or something like that where um things are quieter lights are lower um you know there are like rooms to escape to um i've noticed that that trend happening at least um maybe from the autism side but i think that's something that um you know once we're alive i i noticed this before suddenly everything went into lockdown so i couldn't really go out and try to um learn more about it or try to advocate for it from a misophonia perspective. But that might be something interesting to kind of pursue, maybe approach some of these venues to kind of be more aware of misophonia because it seems like they're aware enough to at least go to the lengths of accommodating people with autism. I'm hoping generally this will be an increasing trend. Definitely.
Miss [42:09]: Yeah, I've noticed the same. It's been really cool to see this kind of increase in awareness for people with sensory disorders. And hopefully it'll continue. And it'd be awesome if more and more people are out there advocating for misophonia.
Adeel [42:24]: awareness um have you noticed um maybe through your own advocacy or or otherwise um you know stuff basically um um you know schools or um businesses or or or or anybody really um you know change their change their ways to kind of like accommodate for misophonia um
Miss [42:49]: It's mostly been kind of one-on-one. I've had a few people reach out one-on-one, specifically like parents who ask me many questions and then they'll accommodate within their lives for their children, more so than larger scale. I've had parents reach out and have me you know, help them in advocating at their school for their children and so that they can make those accommodations. But nothing much larger than that. Hopefully though, those small changes will start to kind of snowball.
Adeel [43:22]: Yeah. How do you do that at schools? Like, do you go into a school and talk about it? Do you do it remotely?
Miss [43:31]: So I'm working on a program right now to eventually start to go into schools and speak, not in person, obviously now, but doing it remotely. As of now, I'm just counseling the parents. So I have like brochures and I sit down with them for a Zoom meeting and kind of let them know, you know, give them all the information they need, talk them through how they can speak about this, who they need to speak to and kind of everything that they might need. support wise in order to get what they need for their child at their school. And then if they need me, they can email me, you know, that kind of thing.
Adeel [44:06]: Yeah, no, that's great. Yeah. I mean, there are a lot of confused parents who would love to have this as a resource. So I'm hoping listeners will, listeners who are parents or have parents or no parents definitely can get in contact with you. yeah yeah we'll have all that information and one thing uh i've um i've mentioned on a number of podcasts but i've been too lazy to actually act on is uh not just approaching schools but uh like hr departments of of companies and making them aware um to try to get them to you know they make accommodations for their you know they buy freaking free lunches and dinners all the time so why not uh make free headphones, noise-canceling headphones standard and squeeze a little bit more profit, more bottom line. I mean, it seems like a no-brainer. So I'm hoping stuff like that becomes, in fact, I'm confident things like that will be the norm soon.
Miss [45:02]: I am confident as well, especially in this kind of growing environment of the common workspace. Well, prior to COVID, the common workspaces, open workspaces like that, more and more people have been opening up about the issues they have with open workspace, whether it's auditory sensory overload or visual sensory overload. So I do think that we're moving in a direction where more and more companies are going to be offering those types of accommodations. And I really hope that that's the case. I would love to be a part of helping to make that happen. however I can help. If anyone needs that help, you know, you can reach out to me if you see a way for me to help with that and let me know. I'm happy to be there.
Adeel [45:50]: Yeah, maybe we'll, once I get off my butt and start to write some notes, maybe we'll compare some notes on ways to do that to approach companies.
Miss [45:58]: Definitely, yeah.
Adeel [46:00]: Because I think, yeah, that would be...
Miss [46:02]: Along with you, I've been sitting on my butt on, you know, kind of creating an advocacy nonprofit for Misophonia for ages. And it seems like that might be the right way to go about a lot of these issues is actually having kind of a 501c3 to be the advocate for innovation, you know?
Adeel [46:22]: Oh, that'd be great. Yeah, please. Working on it.
Miss [46:25]: It's under there somewhere. All right.
Adeel [46:28]: I'll start nagging you every week.
Miss [46:29]: Yes, there you go.
Adeel [46:31]: No, that's really interesting. And when you were working, were you working in an open office environment as well? I'm in tech, so I've seen that evolution of extreme open office.
Miss [46:44]: Oh, yeah. So I did work in tech for a while. And that was not only an extreme open office, but it was actually on an open cattle ranch. Yeah. It was all the extremes you can imagine. So it was like open office, open space. It was on an open cattle ranch. You've got cows everywhere mooing constantly. Nightmare.
Adeel [47:06]: Wait, okay, so this is a tech company on an open cattle ranch?
Miss [47:09]: Yeah.
Adeel [47:09]: Can I ask what company that was? We can cut this out if you don't want to.
Miss [47:13]: No, you might need to cut the name out. So yeah, they have these kind of large wingspan drones that they use to drop medical products in remote areas like in Africa. Okay, I'll cut that part out, but let's continue with the... Anyway, so my more recent job at LLS was also an open plan space, but it had kind of those just very superficial dividers. So what was terrible about that for me is that you can't see anything, but you can hear everything. And for me, that's worse. I almost would rather, with misophonia, I'd rather be able to see and identify the sound that's annoying me than to be trapped in this weird cubicle. Right.
Adeel [47:54]: And you can figure out what weapon would work on that person.
Miss [47:59]: Like, hmm, what can I use to make that one stop?
Adeel [48:04]: No, that's interesting. Yeah, because those cubicle walls are just so pointless. I mean, they're basically just picture hangers. So it's just, yeah. It's just horrible. And we didn't even get into like, because I assume visual triggers are a thing for you as well, or maybe not. Is that, you know, is that something that, yeah, one reason why, actually, yeah, Cynthia, I could never figure out why I just could never stand eating lunch with my co-workers going back to like my early internships. And I feel like, you know, I thought just maybe they were just all boring, but I have a feeling that I think, you know, visual triggers were just kind of always keeping me down. Is visual triggers another thing for you in the office that is kind of exacerbates everything?
Miss [48:53]: Yeah, so I think for visual triggers, I'm definitely like on the lower end of visual triggers, I have to be already like very triggered by an audio trigger or like already in a very stressed kind of situation, very stressed out, very just like not in a good mood that day to be really visually triggered. Or it has to be like, I have like three visual triggers that just will get me every time it doesn't matter. So that's like someone chewing with their mouth open, even if they're... like literally in a different car driving next to me like i can't hear them but i can see it that like will always get me um shaking their leg will always get me or picking at their nails like those are my three visual triggers other than that though i'm actually pretty Um, pretty good.
Adeel [49:45]: I was literally doing two of those things right now. Instinctively stopped watching me.
Miss [49:50]: Sorry. So sorry. Oh, also I apologize. I should have said, you know, like trigger warning. I try to always mention trigger warning before I mentioned triggers, just because I know that it can be, you know, we, we can potentially influence other people to pick up triggers. So I apologize for that.
Adeel [50:06]: And you were probably case in point, but I, but I think we, yeah, we don't get too deep into it. I think no one's, no one's complained yet. So, and they're only 50 minutes into this listening to this. So, you know, they probably would have left before, but yeah, no, that's, that's totally fine. Interesting. So yeah. So you have like a few visual triggers, but it's not like.
Miss [50:26]: It's just not my number one. Yeah. It's more like if I'm already just in a horrible mood and very triggered already, I will notice them and get really, really pissed off. But other than that, I'm, I'm pretty chill with visual triggers.
Adeel [50:40]: Gotcha. Gotcha. Okay. Yeah. So we were talking about office environments and, yeah, and advocacy and your, yeah, your upcoming nonprofit. And, yeah, one thing I wanted to talk about, I know I asked you, like, are there common themes in the stuff you've heard from people, but are there kind of maybe... kind of unusual um maybe some things that you've learned like some coping mechanisms that uh some someone has told you that's been oh it's kind of it's kind of interesting or um some really unusual uh trigger that people have uh that's you know people have had
Miss [51:20]: Coping mechanisms, I don't know that I've learned any from others just because I have developed mine so specifically over the years. Just from being all the way through graduate school, those are such specific environments where you have to really learn and kind of tailor your craft of coping, if you will. But I'm trying to think. People have certainly recommended many coping mechanisms. I just don't think I've picked up any of them for myself.
Adeel [51:55]: Yeah, yeah. Yeah, I mean, all the common ones are very well known.
Miss [52:00]: Yeah, pretty well known.
Adeel [52:01]: Other ones are pretty specific. So, yeah.
Miss [52:04]: Definitely.
Adeel [52:06]: Cool. Um, well I guess, yeah, we're kind of like hitting up, hitting up to an hour. Um, and, uh, but I'd love to give you a chance to kind of, um, talk of, you know, talk to the, talk to the audience free form kind of, what would you want to, you know, obviously have like, you know, links to a lot of your stuff in the, in the show notes and whatnot, but anything you want to tell people who are, who are listening, um, who may be new, um, or are struggling.
Miss [52:32]: Yeah, so a couple of things. One, if you have misophonia or you love someone with misophonia, it will get better and it will get worse and it will get better again. You just have to learn to keep holding on and keep loving that person, keep loving yourself. I know that that sounds cliche, but misophonia is a pain in the ass. And the only thing that will get you through it is... love, kindness, and patience for yourself and for the people around you. Two, if you have misophonia and if you love someone with misophonia, you are the best advocate for misophonia. And so every single one of you can be out there talking about it, sharing it, speak to your doctors, to your clinicians, to anyone who will listen, tell them about misophonia. The more people who are aware of it, the more likely we are to be able to get research done and just have more people understand who and what we are. And three, if there's ever anything that I can do as an advocate for you, you know where to find me. I think the links are attached in the podcast.
Adeel [53:47]: yes that's uh miss misothonia yeah we'll have all that uh all that stuff um yeah get tons of nuggets of information just just there and in this entire episode um and so yeah i just want to thank you again and uh kind of relatively in person uh you know thank you for all the advocacy you've done so far and what's you know will be coming in the future um it's really making a difference and people want to hear yeah real stories from a from a real person who's thought about this a lot so um yeah your work is really appreciated thank you thank you thank you so much for this podcast you know i think um i've learned a lot from the podcast as well as i know my mom listens to every single episode she finds a lot
Miss [54:29]: she really finds a lot of solace in it in knowing that, you know, her daughter is not the only one and nor are kind of all the weird intricacies that, you know, I experienced and that she experienced are not the, you know, I'm not the only one. And, and they're really not unique to just me that like, for example, mimicking, you know, it's just, it's just how misophonia is, you know? So thank you.
Adeel [54:55]: Thank you, Jennifer. That was a good one. Can't wait to have her on again. Hopefully when that book is ready, at least. If you're enjoying the shows, please consider hitting the five stars in Apple Podcasts. You don't even have to write a review. Otherwise, hit me up on Instagram or Facebook at Misophonia Podcast or Twitter at Misophonia Show. Music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [55:25]: you