CJ - Advocacy and Science Merge in Misophonia Journey
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 5. My name's Vadil Amad, and I have Misophonia. This week, I'm talking to CJ, a college student and big advocate for Misophonia in the community. I was really happy to finally chat with him. We talk about how he explains Miso, his work with So Quiet, stress as an exacerbator, and some questions for you listeners. After the show, let me know what you think. You can reach me at helloatmisophoniapodcast.com. Or hit me up on Instagram or Facebook at Misfunny Podcast. And by the way, please do head over and leave a quick review or rating wherever you listen to this show. It helps us. Go up in the algorithms and just reach more misophones. Thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophonia podcast. And this episode is also sponsored by a personal journaling app that I created called Basil, B-A-S-A-L. It provides AI-powered insights into your journal entries and guides you with new writing prompts based on those entries. You can even explore many different types of therapy modalities and approaches and philosophies. Again, it's available on iOS and Android in those app stores. Check the show notes or go to hellobazel.com. All right, now here's my conversation with CJ. CJ, welcome to the podcast. Great to finally get a chance to speak to you.
Cj [1:38]: Yeah, it's great to be here.
Adeel [1:40]: So, yeah, do you want to just quickly tell us a little bit about, well, yeah, where you are, kind of what you do?
Cj [1:47]: I live in western Kansas, and I'm about to be a grad student starting next year. I'll be an accelerated grad student, which means I haven't finished my bachelor's yet, but I'm already getting into it, going into school psychology.
Adeel [2:01]: Excellent. Yeah, should be very relevant. Yeah. Do you want to tell us kind of, you know, apart from from school, kind of a little bit about how you've been in the community, in the Miss Phony community and helping out? You've been doing a lot of things.
Cj [2:15]: I've kind of been advocating for Miss Phony ever since high school. When I was in debate and forensics, I would give speeches about it and it would just make my day to hear like judges and other people just like spectators would come to me afterwards and they'd say, oh, I know what that is. or I didn't know that had a name, things like that. So I've been doing things here that I presented to like the speech language pathology organization on campus. and the Gender Sexuality Alliance on campus. Whenever there's an opportunity to present, I will always present to a misophonia.
Adeel [2:43]: Yeah. What school is that again? That's University of Kansas? Port Hastie University. Oh, okay. Got you, got you. Okay, cool. And you said debates and speeches. Were you kind of giving speeches, or were you engaging in a debate in some way about misophonia?
Cj [2:56]: When I was talking about misophonia, it was informative speeches. So it was just me talking to people for 10 minutes, and I had props and everything.
Adeel [3:02]: Yeah. Oh, what kind of props did you have?
Cj [3:05]: I had this, like, this little hamper, you know, like collapsible hampers. And I had all kinds of props, like shoes, like silverware, like, and I would just... And I had this bucket and I would throw them into the collapsible hamper as I was saying the things and then made people laugh every time.
Adeel [3:21]: Yeah. Okay, cool. I was going to say maybe a baseball bat to show like what we think of doing to people when they're triggering us. But that probably wouldn't go over too well, I'm sure. No, that's super cool. And so, yeah, since high school, that's amazing. Were you, I guess, when did you find out you had a name, Misophonia? And we could talk about your background to you.
Cj [3:42]: I can't remember. I did grow up with the internet. My dad was an IT guy. So very early, I was always like in internet rabbit holes. And there's one time that it had been a problem with my family for a while, like dinner time and everything. And then I just found a video on it. I remember it being about Doritos. I don't remember the specifics, but something about some guy eating Doritos. And it explained what misophonia is. And then it's like, oh, this is a thing. This is something I can actually look into and research. And I went down the rabbit hole, read Tom Dozier's book, and right yeah and then and and so yeah typical family kind of uh dinner time first uh onset um that got that was a really early one it was very severe my first like vivid memory was in school uh noises during exams like uh sniffling was a big one just during exams like any any repetitive noises during exams because That's why I really believe that stress is an exacerbator in misophonia, because during exams is the time that it was most affecting me. And even now, like, times when I'm really stressed in life, I have to be even more cautious about it.
Adeel [4:50]: Yeah, yeah, yeah, absolutely. Stress definitely exacerbates it, taking you out of... Well, not even when you're concentrating on something, when you're just generally stressed out. misophonia. It's not a great time to be triggered. So you said during exam time, so I'm assuming that's kind of in high school? No, like elementary school.
Cj [5:12]: You'd be amazed at the amount of testing that they make everyone do throughout school, which is kind of why I'm going into school psychology, where it's like, I think it's ridiculous the amount of stress that we put in on children.
Adeel [5:22]: So were your family members also... So I guess, was school your first trigger then?
Cj [5:30]: I think it was my first and my most severe, but my family didn't. My misophonia is kind of weird, and that's what I want to talk about a little bit. I feel like my activators are correlated to how much I have the most exposure to at the time. Times in my life where I've been in school, that is when those have been the worst activators. Times when I've been with family, those have been the worst activators. as i'm rotating like during covid like some of the worst activators are ones that i didn't think about like um like saliva sounds and audio recordings things like that right uh but it just has to do with what i see the most in my life at that time yeah yeah my family like during summer vacations and things they were they were my activators yeah and what do you i mean what how how was how were you reacting at the time before you knew you had a name Uh, just various coping mechanisms, like putting my hair, like I usually try to keep pretty long hair and then it's getting more difficult as I'm getting older. Um, but, and then put it in front of my face, uh, hoodies, hoodies are always good to like wrap around and just always moving your hands in some fashion.
Adeel [6:38]: So are you getting visual triggers as well? Is that why you had your hair down?
Cj [6:41]: Yeah, visual activators are actually like some of my worst, like, because auditory ones, for the most part, you can block them off, there's enough tools, like some people would probably say otherwise, that they're just overwhelming. But for me, at least, get earplugs, get white noise, and just loud noises. And I feel safe. And I feel like it's gone. Whereas visual stuff, it's a lot harder to function in life, where you have you can't see anything like I'm mad respect for people who are severely visually impaired.
Adeel [7:08]: Right? Yeah, yeah. No, that's a good point. And okay, so yeah, so your visual triggers are even worse. So how did your parents react? How did your family react? What did they think as you were reacting to triggers?
Cj [7:24]: So my family was kind of concerned with other things. I had a little bit of a complicated family, and it's simpler than most. No one has a normal family, but my mom was disabled. She had a muscular dystrophy disorder called Friedrich's ataxia, which is really rare. So She was in a wheelchair for my entire life. And when you have someone you need to care for who's in a wheelchair, your children's mental health kind of falls in the back burner. And that's okay. But I've learned to accept that they're just trying their best with what they had. But yeah, it felt like I wasn't understood and that it was invalidated because it's a mental health issue. And if you're not experiencing it, it's really difficult to put yourself in the shoes of someone who's phony.
Adeel [8:00]: Right, right. And how about also at school? You know, you're going through all these tests and being triggered. Were you able to get any kind of accommodations at school, or what was your reaction there?
Cj [8:12]: You know, that's what frustrates me, is that children really can't advocate for themselves. Every child has to fall within a box, and the administration puts more rules than they do less. Like, if it's easier to put a rule that hurts someone versus having the chance of a kid do something wrong, then they will put the rule. It's very hard to speak up and say, hey, I need this or I'm having a bad time. Like, no, get back in your chair.
Adeel [8:35]: Right. And what are as you got older and into high school, were you able to get were you able to find a little bit more flexibility, like a little bit more accommodation?
Cj [8:48]: Yeah, as I got older, I was able to just I can show my professors like it's gotten easier to talk about it. But as I got older, I could show my instructors and my professors now. that, oh, this is a thing. Can I wear earplugs? My earplugs aren't going to harm you. And it really just depended on the person. Sometimes they'd be like, no, I don't want you to. Sometimes, like, I probably shouldn't reveal this in a public setting, but during the ACT, our school had a free ACT provided for all students, which is really a good equalizer for rural Kansas because there's so much class division when it comes to education. And during the ACT has a rule where you cannot wear earplugs. earbuds unless you have like a diagnosis and you need the accommodations for it but because it was a group thing we had so many students from my school and it wasn't a typical act but it was proctored uh i asked my act advisor and they said i can wear earplugs okay rules in place like i can imagine someone well from earplugs but also why right yeah yeah um
Adeel [9:47]: Yeah. How would you, how would you cheat with form earplugs?
Cj [9:50]: You can write really small. Oh, oh my gosh. You can also store information in your calculator. Don't check your calculator.
Adeel [9:56]: Yeah, exactly. Exactly. Um, interesting. Okay. And, um, and so, so yeah, it sounds like misophonia and all these experiences have kind of, um, um, or influenced your, your school choice or your, your career path, uh, and your, your education path. Um, Am I correct in saying that? Is this kind of like what you want to focus your life on?
Cj [10:23]: Yeah, basically all of my careers have been guided by misophony. Like initially, like in middle school, I wanted to go into computer science and be one of the many misophonic software engineers that are out there. And then I went into library science and I worked at a library for many years. I still work at a bookstore. And then because they're supposedly quiet, they're really not. It's kind of worse in the library because quiet is arguably worse than loud environments. And then I decided psychology because we're better to help people with misophonia than a type of career where you're advocating for misophonia directly rather than just trying to go around it.
Adeel [10:58]: Are you finding professors and people in academia around you that are also helping you advocate? And how's the support? Are you kind of like a lone wolf kind of like still advocating for misophonia or do you have others around you who are helping?
Cj [11:17]: I feel like I'm the only one who directly advocates for it, but people have really respected it since I got here.
Adeel [11:22]: Yeah. And what are you... I guess you're in your bachelor's right now, so you're probably not doing a lot of research, or maybe you are. I'm just curious, are you doing any work that's directly related to BESO right now?
Cj [11:35]: Actually, I did a research project based on your podcast last year, where I went through and listening to every single podcast, I had a huge spreadsheet, and I collected data. I collected... where people lived their uh uh their gender that they represented as their occupation and their activators that they listed the emotional words they used to describe their activators i listed all that uh so like 126 hours of all that and then yeah yeah yeah um yeah i didn't find really anything that significant uh i found that in the last one there yeah there was there wasn't anything too significant that I can really rely on because a lot of it was like scales of how much social support do these people have based on how they described it. And it was very much, I was consistent, but it's still very subjective, but yeah.
Adeel [12:25]: Were there any, yeah. I mean, some of the things like I haven't, I haven't even done anything too quantitative on my own podcast, but you know, one of the things that has surprised me is just the, the, the amount of like childhood adversity during childhood. that I've noticed. There's usually been something, some kind of walking on eggshells childhood situation which has come up. I would not have necessarily guessed that a few years ago when I thought it was just some kind of a difference in the brain. So that's one commonality that I wish... could be looked at more. I'm curious if you noticed that kind of looking back at a lot of these episodes.
Cj [13:15]: The question you have to ask is how that compares to a control group, how that compares to the general public. Because I would say children and adolescents in general have a lot of walking on eggshells, like the storm and stress time in their lives. But honestly, I discovered that there were a lot of people who were very positive towards their misophonia, just generalizing. This isn't like running stats or anything, but a lot of people who thought that their misophonia was a blessing and gave them the ability to point out details or to be more empathetic or all of that.
Adeel [13:45]: just it wasn't yeah this isn't all just people depressed like my life is hopeless like right let's all like cope together with just this fact that we have this horrible disorder and that was honestly a lot of very diverse people yeah that's that's kind of one reason why i one reason why i started it is to get a bunch of just diverse ideas and how it how it's affected us and what we think about it what we think about ourselves uh yeah there have been some rough um uh people have had some rough backgrounds but even they have come on and said that you know they're they're able to cope they're doing well they're they're otherwise uh you know happy funny funny people but uh you know people have come on and said that they you know they feel like they have a empathy superpower and i noticed that when i i feel like when i talk to people with misophonia on this podcast and then i go out into the street and talk to random people i feel like there is a i don't know there's a um i feel more empathy maybe it's just because i feel more connected with people in misophonia but there is an empathy that that i think is um or high sensitivity there's a lot of high hsps um that come on this podcast and i don't know i feel like that that's uh definitely like you said it's kind of a kind of one one blessing that can come out of this yeah do you still yeah do you say do you i mentioned hsp do you identify yourself as maybe a um I don't know if it's an official term, but highly sensitive person.
Cj [15:09]: No. I've talked kind of before to my friends about how when I was... Like three or four, I was sent to therapy for reasons I don't remember, but I was diagnosed with autism. But then my parents said, no, you're not. So I don't know if I'm if I have some other kind of comorbidity. Yeah, I might. One of my therapists who wasn't certified to actually diagnose me said that I might have OCD, but I don't have anything else that like I would really like say definitively that.
Adeel [15:37]: Yeah. Are you seeing any psychologists or therapists about misophonia?
Cj [15:43]: I've seen a counselor on campus, but therapists who are just so misophonia specific end up being really pricey. Yeah, they're pretty rare. General stress is most of the help, I feel.
Adeel [15:56]: Gotcha, gotcha. so okay so so you yeah you're you're stuck with uh yeah you've you've you've just um tried yeah counselors on campus and then and so they're helping to deal with like rick like i don't want to say regular stress but like general general kind of more general issues not specifically in miscellaneous yeah just general life things yeah yeah have you um and so okay so then you're you're yeah i guess a lot of your coping methods are the headphones um i guess what do your other like your friends around you now think you said that you know doing speeches people come up to you are you finding um uh first of all are your friends supportive of misophonia yes my closest ones are and i find that like the more supportive they are the closer they are i don't know if that's yeah or or that's just how it works um but
Cj [16:48]: But some people just forget frequently. And then I, I'm very visible when I get, when I'm affected by misophonia, like I will just kind of freeze and internalize and they can tell that I'm just out of it. Right. But I've, this, I kind of like set myself away from people for a while. I isolated myself because I was like, people, all people do is activate me. All people do is just judge me. And I was in a really negative space for a while there regarding socialization. recently I've found people who are just really accepting even when like I have one friend who even when they're doing something that they think is like they don't know is an activator if it is something that could be an activator they'll check with me I have a fairly short list of things that do activate me but there are little things I feel like it's a whole spectrum like some people have
Adeel [17:37]: some people have a huge list of activators that they all affect equally whereas me it's it changes during the time right right right i'm curious how that you know the experience because i think a lot of this uh of you know we think about like Is this, are people taking this seriously? Like, what do people think? Like, how are people judging me? Because, you know, objectively, it seems like a silly thing, being affected by sounds. And especially with your background, when you kind of grew up in an environment where it was kind of dismissed because there were other things going on. Do you sometimes, I sometimes even think about, like, how it must look like to another person. It must seem... so silly and that just kind of layers onto the stress but you know maybe when you're explaining to people are you kind of you explain it in a certain way to kind of like like what I when I try to explain to people I tell them like I know it sounds silly but how do you how do you how do you how do you I guess how do you explain this point to other people in a way that will make them realize that yes it sounds silly but it has a huge impact
Cj [18:47]: Yeah, that's one approach is people like trying to, you can try to humanize and say that this really bothers me or whatever and try to get them to relate to it. But a lot of times people just can't relate to it. And so what I do personally, and I don't know if it's right, it works for me, is just spit the most science at them. And they just are so like, oh, this is a thing I don't understand. I'll let you take the lead.
Adeel [19:07]: I see. Yeah, yeah, yeah. Gotcha. Yeah. And luckily, there's been a lot more research in the past few years and there will be more coming up. So, yeah, that's definitely a great approach. And what are some of the, I know you're kind of in touch with a lot of the latest science and obviously you'll have a big impact scientifically in the future. What are some of the most interesting directions for you that you've been seeing in the community?
Cj [19:34]: I'm just really interested in Kumar's mirror neurons. And I don't know how long that's gonna take for us to get the next phase of that, the next research. But that's the one I'm most looking forward to, I think. There's a lot of good research. I went to the CARE Day from So Quiet, and there's a whole bunch of different directions we can go in. I think the priority right now should be treatment. But I'm not sure exactly. I don't really do the clinical psychology. I'm hoping to help students get accommodations. Yeah, yeah, yeah. It's like, you can tell us the numbers. You can tell us, like, oh, people in Miss Phonia are, like, more creative. Or, like, there's interesting things that you can find out. But what we need to figure out to help people, like, as soon as possible is treatment. Like, help them with their daily lives.
Adeel [20:20]: Right. Yeah, a lot of the research is neuroimaging, taking pictures of the brain, which is going to help understand it, obviously. But there's a lot of steps from there to get to a treatment that can kind of be derived from things like neuroimaging. What do you think we can do? What are the most promising things we can do now to help people day to day?
Cj [20:51]: I think stress management is a huge one. There's no research on it. I've been trying to figure out a way I can do a study on it, but I haven't been able to figure out a way that would have a good sample. But for me, change makes my misophonia easier. It's like at the beginning of each semester is when things are the easiest. At the end, when I'm used to my surroundings, that's when my brain starts to pick up on, it starts to predict when the activators are going to happen, and they're the most severe. I'm wondering how changing routines can affect people with misophonias.
Adeel [21:22]: That is fascinating, actually, because, you know, for me and for a number of people, we grew up, we kind of developed misophonia. For a number of people, there's a lull when we go out into the world, into college and maybe in the workplace, and it kind of like subsides a bit or we forget about it, but then it creeps up. and I'm wondering if it that is some kind of a change I just assumed it was like I don't know what I assumed but yeah maybe maybe changes it because you're changed or like being born is a change and then and then and then what you know after a few years when we we developed this point around the people were most close to It seems to subside often, and I'm not a scientist, but when our environment changes and we go out into the world, we go to college. But, yeah, you're right. It does kind of creep up on you when your brain picks up on sounds when you've been around it long enough.
Cj [22:19]: Yeah, it's like when you've been in an office with someone and you know that the person you write is going to be in a bag of chips at 11.43 every day. You know to expect that, and I feel like that makes it more... makes it worse. But this is all anecdotal from my own experience, so I don't know how other people in Misophonia, if they have that.
Adeel [22:36]: This podcast is all about exploring anecdotal ideas, because this is where, you know, hopefully we'll get ideas for research. The interesting thing is, you know, because we often think about Misophonia as a fear response to kind of warn you of something. It's interesting that It's only warning you of something like long after you've gotten used to the environment, which kind of seems like the opposite.
Cj [23:03]: Well, it's very efficient. I think misophonia is just your brain making efficient connections of stress, for stress, where like we talk about the lizard brain. Or you're in the wild and you hear like, you know, that a panther is going to come through here at this time of day to go to the water hole. I don't know biology, but like it's going to come around this time consistently. A lot of things in nature are very cyclical. They happen to think about a rooster crowing at every time, every morning.
Adeel [23:30]: Right.
Cj [23:31]: So it makes sense when you think about like you can't put everything on evolutionary psychology, but it makes sense of like the we're not designed to live eight to five. And maybe there are some effects. Because people are more nomadic and then agriculture came along. And this is where we're at now. And what is this? How is this affecting everyone differently?
Adeel [23:51]: Yeah, yeah, yeah, yeah. yeah no it's well yeah i guess uh yeah what i was thinking was like yeah i definitely i definitely think it's a it's a lizard there's a yeah there's a lizard brain uh component here um it's just interesting that like you said when you start a semester you don't really notice it maybe so much because there's a change but then uh it's only after a while of that routine that you start to pick up on things And I would have, I guess I would have, well, maybe because maybe it's not just an instant fear response, but I would have thought that the initial part of that change, the initial time, the life cycle of that change would be when we would be most sensitive to change at the beginning rather than later.
Cj [24:33]: But I think people in Miss Phonia are very good at coping with change. That's what I'm curious about. We seem like a very resilient group of people in some.
Adeel [24:39]: Yeah, yeah, yeah.
Cj [24:40]: I'm wondering if people in Miss Phonia are stronger at all, just in in terms of our ability to cope with stressors.
Adeel [24:48]: Yeah. Have you met other people on campus who have misophonia?
Cj [24:56]: I don't know if I've met anyone with severe misophonia, but I've had people come up to me and say, oh, I heard you talk. I have this thing. My friend has this thing. No one who... like it seems to affect to as much of a level as me where like my entire life is like look at outside my office there's posters of misophonia like so quiet things like yeah very much you can tell i'm the misophonia guy on campus right whereas if there are people in misophonia who are extremely affected by it i don't they have not come to me there's people who like say that oh i this is a problem for me and i but no one who cares around earbuds and yeah speaking of uh speaking of so quiet how did you connect it how did you get connected with chris and so quiet
Adeel [25:38]: heard about the cards actually no i heard about the no gum pledge first way back in the day um yeah and then i was just like hey i would really like to volunteer for this because i need like a direction to go when it comes to the volunteering right right right and um yeah no i mean yeah the cards and yeah the cards in particular have been have been super super popular um yeah that's great and um So now that you're, I mean, I'm curious, now that you're, I guess going back to your family, now that they know what it is, are they also, you know, you said your friends are generally accommodated with at least the ones who are close to you. How about your family now? Have they over time become more understanding?
Cj [26:23]: Yeah, my family all knows about it, but for the most part, it's very much on me to cope with it.
Adeel [26:28]: Yeah.
Cj [26:28]: If I'm in a situation where I need to cope with it. Like, the big ones, like gum chewing is probably my biggest activator. Like the jaw movement of it, especially.
Adeel [26:37]: Right.
Cj [26:37]: That, like, that's an easy one to ask people to do. But other things like, like restless leg syndrome and... just little movements that people don't even notice they're making. Like, I can't ask them to do that, so I just have to cope.
Adeel [26:50]: Right.
Cj [26:50]: And they don't... My family and I aren't that close, so they don't pick up on the little things. Like how it just frees up.
Adeel [26:57]: Gotcha. And any other family members that you know that have misophonia?
Cj [27:03]: Or are you just you? My step-grandmother might have it.
Adeel [27:09]: Okay.
Cj [27:09]: I know there's, like, supposed... with like the 23 and me thing, there might be genetic length, but so that doesn't work. But, um, yeah, I know some people who might have mild versions of it.
Adeel [27:19]: Gotcha. Um, and if you've listened to the podcast, you don't like to jump around, but going back to, uh, mirror neurons, uh, I was also fascinated by that study. Um, um, yeah. What did you, I mean, I guess, what did you think about that or where do you, where would you like to see that, that study go next in terms of, uh, because there was that the heather hansen uh uh it wasn't a direct follow-up but it was kind of a response to that saying that it's not all orofacial um i'm curious kind of what what where you would like to see mirror neurons being investigated especially treatment like i know that for some people imitating works for some people it doesn't um
Cj [27:59]: Yeah, just the ways that we can use this Miranon.
Adeel [28:03]: As maybe a way to suggest movements or at least suggest some protocol as to when you're being triggered with certain sounds, maybe make a certain motion.
Cj [28:16]: Yeah, to have a bigger tool kit with you of what to do when.
Adeel [28:20]: Gotcha. Gotcha. Do you, are you aware of any, um, uh, of any other toolkits that toolkits that exist? I know, uh, uh, you know, Dr. Gregory has mentioned, um, things she asks, uh, she does sometimes in her clinic, which are, which are things like, uh, um, you know, you know, playing with the sounds, uh, in your head, like trying to control it, but put a level of control over the sounds. And that's kind of like, I guess kind of what the mirror neuron. study also suggests is somehow um cognitively trying to trying to regain control for the sounds you think i guess more fundamentally do you think uh control is a uh the need for control um is is an aspect of misophonia and misophonia treatment yeah i think it is i'm not sure where exactly we need to go with that approach but i i do think that's the reason why it's other people for a large part it's when other people are doing things or things that part in your control whereas if you can take a little bit of that back it makes it less severe do you find humor is also because i find like you know even if i can't do anything about it if the other person is somehow if i can crack some kind of a joke or make something light about it that it kind of helps a little bit do you find that that is a way also a way to i guess reduce stress i think that's a way to um reduce stress for a lot of things yeah i don't know that's not me specifically that's if you have any part in life that's giving you stress joking about it just helps yeah yeah um yeah stress and control i wonder yeah um are you are you thinking about any of these things when when you're going through a trigger are you like um or do you do any do you do anything i guess to kind of like reduce stress day to day uh like when you wake up in the morning or in the middle of the day some people check in do a body scan um are you are you doing any kind of like uh meditation are you doing anything like that during the day to kind of try to reduce stress
Cj [30:13]: I try to step away from routines. I used to be the kind of person, okay, I'm going to do my progressive muscle relaxation. I'm going to do my yoga every morning. I had different things. I'd be like, oh, these are supposed to improve your mental health. I would try this every day. And then I noticed that just by adding more things to my, I have to do this every day, it makes it worse. I try to get up when my body's ready to get up. I try to avoid setting alarms if I can. which sometimes I'm busy and I have to because life but if I can I prefer to do things as I feel I need to do them like eat when my body says to eat sleep when I need to sleep exercise and I feel like I've been sitting all day those kinds of things yeah yeah yeah yeah um no that's a good point I have you know I've had alarms set up for
Adeel [30:55]: meditation various things and i always just end up ignoring them as well so but seeing them does add a little bit of stress um you you see you mentioned you read the tom dozer book earlier uh and and you mentioned progressive muscle relaxation which i think is uh, from his, from, from his book. And I think one of the things he, um, gets clients to do, uh, you know, I guess, what do you think of Tom Dozier and his, his approach? Cause he's, you know, a little bit controversial in the, uh, in the, I was wondering why I hadn't heard about him from other circles in a while.
Cj [31:28]: Uh, cause he was very revolutionary for me in high school. I don't know if I agree that the treatment works, but, um, I definitely, have you spoken to him?
Adeel [31:36]: Like, have you, uh, or have you even gone, gone over to California?
Cj [31:41]: I've gotten in contact with him to ask about how much it would cost to do all that, but I haven't done anything with him.
Adeel [31:48]: Got you. Okay. Are you doing anything from... I haven't read the book, so I'm just curious what's in the book. Has anything been useful for you?
Cj [31:59]: I just read it in 2019. I do remember definitely the thing about how triggers are formed, where... It's very much conditioned. I agree that it is a conditioned stress response, which is some people will disagree with that. But I do think it has to do with your brain picking up on, oh, I am stressed right now. These things are happening when I'm stressed. We need to know that these things are correlated with the stress where it's just stepping over something when it shouldn't.
Adeel [32:28]: Right, right. Is part of his treatment at all trying to find that early sound and, you know, de-link it by actually finding that sound? Or is it very much just kind of let's focus on your muscles and try to calm them down?
Cj [32:44]: You know, if I remember what, I'm trying to remember specifically what his treatments are, but there was like this trigger tamer app or something, I think that was called. Right. Where it's like, let's try to link this to a positive thing and try to like unseat that conditioning.
Adeel [32:58]: Yeah, because I think a lot of this, one of the criticisms, I think, of any mispointed treatment is exposure therapy. And I think that's what some people get in a little bit of hot water if they're trying to prescribe exposure therapy. And I think the Tamer app or one of them was about playing triggers at a low volume and then increasing the volume to try to get you to habituate. Yeah, it's on help. Yeah, right. Most people... Right, it doesn't help most people. So you're doing the accelerated master's program. Do you have any idea what you're going to do in the master's program?
Cj [33:41]: I'm not sure. I'm not sure exactly what school psychology looks like compared to experimental psychology where all the opportunities I'll have. I know I get to do an internship my last year of the program because that's the thing you have to do for licensure, but... I'm going to, of course, try to do research whenever I can.
Adeel [34:00]: So with school psychology, then I think the goal would be to maybe become a counselor at various schools or districts or universities.
Cj [34:09]: Yeah. I would love to work in rural schools where I grew up, where people don't always have access to the most appropriate information. And to say that, oh, this student is having problems. Let me figure it out. Let me try to advocate for them when they can't advocate for themselves.
Adeel [34:23]: Right. Well, do you, well, I guess, yeah, we're coming up to about 40 minutes, but I'm curious, like, I'd love to hear, yeah, I'd love to hear, I guess, more about, like, what you have to tell people who have, other people who have misophonia, but, you know, and I'll also be curious, kind of, like, what you tell groups of people who don't have misophonia, like, how do you explain, you know, misophonia, just so that we can... you know some tips some advice for i know we mentioned a bit earlier but some advice uh for folks who are not used to um explaining it obviously you have a lot of experience yeah i don't have a very good elevator pitch i'm working on it but i'm trying to think of like all the presentations i've used like the same slideshow for the past like three years but would just keep adding to it oh so you have a slideshow do you have it public anywhere
Cj [35:13]: Oh, no, but I could probably put it on my blog or my website or something.
Adeel [35:15]: Yeah, yeah. Oh, and you do have a – have you been writing for the So Quiet blog as well? I think I've seen – I've read a number of your articles, I think, over the years.
Cj [35:26]: I've read a couple, and I'm hoping to get back to write more in the summer.
Adeel [35:29]: Okay. And is your personal blog pretty active? Are you writing on your personal blog at least?
Cj [35:36]: I'm not really. I'm kind of split between – I sort of work for Tiger Media Network, which is our campus newspaper. Okay. I've been writing for my honors college. I've been writing for, I'm so quiet. So I'm just kind of split up right now. I do have a website that I'm going to add to after I graduate.
Adeel [35:51]: Gotcha.
Cj [35:52]: If people are interested, I can post my slideshow there and put that on there.
Adeel [35:55]: Yeah, we'll put it in the show notes. Yeah, this will be up in at least a few weeks. Obviously, we'll be in touch until then. But yeah, I guess anything else you want to share with other misophones who are listening? I know you've obviously listened to a lot of episodes because you've done a bit of a study on it. But anything you want to share? Anything you want to tell people who are listening now? because i have more questions for people than i would have things that i feel like well actually put in the questions because uh yeah let me know the questions because i think i'll try to get people to answer via you know social media or whatever and then you can you can see that you see everything there yeah i want to know what people think about um routines what they think about being outdoors uh because i wonder how much just i wonder if misophonia
Cj [36:47]: the severity of it is impacted at all by being in nature or like, I feel like our bodies aren't built for what we're doing with them now. And I'm wondering if misophonia is kind of a backlash of that. Do other people chew their nails till their stubs? Because I'm still picking up on this entire interview. Yeah, yeah, yeah. Coping when you feel like freezing. That's a thing that I do. When I am activated, I will freeze up and I can't think about mimicking. I can't think about, oh, I need to be reaching for this right now. I will just shut down.
Adeel [37:23]: That's the one question I have with a lot of coping mechanisms. Even the ones I talk about the most, like self-soothing and trying to tell yourself even before it triggers that nothing is going to attack you. It's like... We don't like to think about misophonia. So usually the time we think about it is when it hits and then afterwards. And then when it hits, like you said, we usually freeze. We don't have time to think about it. So, yeah, I don't know how to solve that problem. Other than maybe writing it on your hand.
Cj [38:01]: I guess thinking back to So Quiet, something that would be a good question for you would be, how do you get involved with the misophonia community in general? There seems to be this whole squad of misophonia-like heads.
Adeel [38:15]: I was there.
Cj [38:16]: I don't know if you know why you're in it.
Adeel [38:18]: yeah no i was just i was just some losers sitting at a table at the miss phony convention like in 2019 it was like my second convention and uh yeah it was at the um whatever the the meet and greet the night before where i was talking to lyle who's episode number four or five i don't remember Um, but then I was just like, I think, I think it would be cool to like, just interview people. And so like a few weeks later, this thing started and, um, but yeah, I mean, back, like I said before, back then I didn't know, I knew very little. Uh, I just knew that there was the first Kumar research. I knew, I knew, uh, obviously Marsha Johnson. Um, but I didn't really know much else. Uh, you know, all the stuff we've talked, most of the stuff we talked about today, I didn't, I didn't even know. I didn't actually, I don't know, even know if I knew who Tom Dozier was, uh, was, he was there at the conference, but, um, but yeah, it was just kind of just starting to do something and sticking with it was how I did it. um and for me i mean i just found out like uh i just found doing the podcast like i i didn't think how i don't know how long it's gonna last like there's like everyone wants to talk about misophonia like a lot of people want to talk about misophonia so it has not been hard to find people to come on the show and it's just kind of i don't know it's kind of built from there turned into a habit so um but you know, that's, it's just a matter of doing, and I'm sure Chris would say the same thing. He, um, you know, he started as a passion and, uh, because, because it is not in a lot of people talking about or taking it seriously, but there's such a need that I don't think it's hard for someone to, um, to kind of get out there. And I think you're, you're well on your path as well. I mean, you're, um, you know, you're already out there and you're choosing, uh, um, a education path and career path that's going to just, you know, highlight you even more and you'll have more opportunities to, to advocate. But, um, I don't know if I answered your original question or I don't even know if it was a question, but, uh, all I'm saying is like, uh, um, yeah, there are, I guess there are a few people you hear about a lot, but just because it's a small world, unfortunately still that we're just trying to make it bigger.
Cj [40:28]: Yeah, I'm just wondering kind of what makes the difference between all the people who come on this podcast and it's affecting their day-to-day lives and what they're doing and how it all just... There's so many people with me, Sphonia, and then they're so disconnected.
Adeel [40:42]: Yeah.
Cj [40:43]: We hear about them for the podcast and then we never hear from them again, which, I mean, that's okay, but I feel like as a community we can really band together and do some things. yeah yeah right we have so many artists like that was another thing looking at occupation was there's so many creative people and people in like diverse settings and i know like it's kind of confirmation bias like going on to the me's funny podcast and right you only see the only funny you don't know how that's represented but yeah it just seems like such a big part of some people's lives and yet it's amazing that we don't hear about it
Adeel [41:15]: yeah yeah i mean yeah i guess a lot of us just kind of live in sounds i mean look at the social the reddit group has got like tens of thousands of people now you know those are those are people who obviously have identified as misophonia uh and have bothered to create a reddit reddit join the reddit the subreddit for misophonia so there's a lot of people out there that are just kind of like going around day to day um yeah hopefully hopefully there will be i'm sure there's it's not going to end with still quieter the podcast or or other things there'll there'll be other groups and maybe you'll have a big part in banding people together who's the
Cj [41:53]: The one doctor who had the study on prevalence. Was that Jane Gregory? Dr. Jane Gregory? Or was that a different one?
Adeel [41:59]: On prevalence? Oh, yeah, yeah, yeah. So Dr. Jane Gregory, she just published one about prevalence and thinking the UK and having it up to 20%.
Cj [42:09]: Yeah, and I'm thinking that like... We hear all the time about different personality disorders and, like, bipolar disorder and, like, disorders that have, like, a 1% to 3% of the population.
Adeel [42:21]: Right.
Cj [42:22]: And those are the ones that are getting all the attention, which they need the attention.
Adeel [42:26]: I think people think they can identify with misophonia, maybe. Like, they think that it's, oh, it's just, I'm annoyed by sounds. That's just a more extreme or slightly more extreme version. that could be part of the reason why it's dismissed so much um whereas bipolar or these other things are you know classic associated unfortunately with like the classical notion of somebody who's mentally ill Yeah, well, CJ, I mean, this is great. Unless there's anything else you want to share, I want to thank you, first of all, for all this work you've done and what you're going to do in the future. And thanks for coming on the show. Thank you, CJ. And super excited to see your impact in the community over the coming years. If you liked this episode, don't forget to leave a quick review, or just hit the five stars wherever you listen to this podcast. Remember, you can hit me up by email at hello at missiphoniapodcast.com, or go to the website, missiphoniapodcast.com. It's even easier just to send a message on Instagram at missiphoniapodcast. Follow there, or Facebook, and on Twitter, we're at missiphoniashow. Support the show by visiting Patreon at patreon.com slash missiphoniapodcast. Theme music, as always, is by Moby and it's over this week. Wishing you peace and quiet.
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