Jess - Finding resilience and coping strategies through community
Transcript
Adeel [0:00]: Welcome to the Misophonia Podcast. This is the 10th episode of Season 3. My name's Adeel Ahmad, and I have Misophonia. This week, I'm talking to Jess. This was recorded not long after the most recent Misophonia convention and Jess had just attended it online. She talks about that sort of high you get when you just come out of meeting lots of people like you who have Misophonia, which is kind of what happens after a convention like this. We talk about all the struggles she's had trying to communicate misophonia to the people around her as a child, through friendships, relationships, and work. Few people really acknowledged and accepted what she's gone through until recently. But she's marched on and has a great job and life at the moment. Her story is that story of perseverance that we all kind of have to go through. On that note, just want to say that interviews for next season, season four, will happen in March. And you can sign up right now through the Be A Guest link on the website, misophoniapodcast.com. I'll also have a direct link in the show notes. They're already starting to fill up, and I'm sure this will just accelerate after the holidays. So please grab a slot now if you want to talk about your story. I can't wait to record again. There are already some great episodes lined up from all over the world. And these happen over Zoom. They're super casual. No need to prepare for anything in advance. All right, now let's get right into this week's episode with Jess. Jess, yeah, good to have you here. Welcome to the podcast.
Jess [1:36]: Thanks for having me.
Adeel [1:37]: Yeah, I'd usually like to kind of find out about kind of where you're located.
Jess [1:42]: I'm in Portland, Oregon. I know you've had a lot of guests from there already, but I guess we flock here, I suppose.
Adeel [1:49]: Yeah, yeah, yeah. There's a lot of interesting stuff going on in Portland these days. And did you know Elise? Elise is based there, and she kind of is pretty active in the Misophonia community.
Jess [2:03]: I actually didn't have too much of a connection to the community until this past weekend when I finally went to the conference.
Adeel [2:14]: Oh, God. Yeah. You signed up. Right. So were you, I think you were in, right, you were in some of the sessions that I was, that I was, I believe I was in at the conference, right? And that's where probably where you signed up. Cool. Cool. Cool. All right. Good. Yeah. Good to have somebody from the, from the, from the conference. And great. Okay. And I, yeah, so I guess you want to tell me a little bit about by yourself, like, are you working, you're a student?
Jess [2:40]: Yeah, I'm, I'm 29 years old. I work in Portland. I am working remotely right now from home because of the pandemic, obviously, but we still haven't returned to the offices, so I'm still at home.
Adeel [2:55]: Do you want to talk about what type of work you do?
Jess [2:58]: Yeah, sure. I do inventory analysis and using Power BI a lot. I work for a company that does a lot of retail and has a really strong connection to the healthcare industry and credit cards and banking and things like that. So, the financial services company.
Adeel [3:23]: Gotcha, gotcha, yeah. Yeah. Awesome. So, yeah, you're working from home. You're still there. Are you guys going to be going back to the office anytime soon or is it kind of still TBD?
Jess [3:34]: I think it's up to... I think it's just up to the... the cars that be in Portland until further notice. I haven't gotten much information on how we're going to reintegrate back into the building and into teams at large. As you can tell, I don't get a lot of interactions with people over Zoom or meetings. I pretty much only talk to my boss every day, and that's about it.
Adeel [4:02]: Yeah. So how's it been then? Was it a relief to get out of the office in some ways? Or is it not too bad in terms of MISA where you were working?
Jess [4:16]: Actually, so nobody at work knows about my misophonia. And I keep it pretty hush-hush generally. But especially at work, I did have a desk where I sat right next to my boss and right across the, like, a cubicle divider from another two people that I work with. And a long time ago, probably early 2020, I asked to switch desks because of the misophonia.
Adeel [4:51]: Yeah.
Jess [4:53]: And I made, I kind of used a different excuse for it. I actually... Last year, around this time, I went to a sleep specialist for this problem I was having. I was falling asleep in the daytime all the time. And I've had this issue since teenage years. But somebody finally, one of my friends finally convinced me to go to a sleep specialist. So I got a sleep study done and found out that I have idiopathic hypersomnia, which doesn't really mean much, but I fall asleep a lot and Basically used that as my excuse and told my boss that I needed to kind of that I wanted to be kind of in my own corner of the room so that I could kind of set the alarm when I needed to. So that every once in a while I get a little bit of a jolt. Yeah. Yeah.
Adeel [5:48]: Yeah. And what did your boss say then was fine? Um, whatever you need to do.
Jess [5:54]: Yeah. Yeah. I don't think he really, uh, understood what was, what I was asking for, but, um, eventually I got my new desk and it was fine and we haven't talked about it at all since. So, uh, yeah, I'm, I'm in a really good, like, I mean, when we were in the office, I'm in a, I'm far away from everyone else. I'm at least five feet away from everyone. So, Even a little bit COVID friendly if we were to go back. But yeah, I got a lot of questions from coworkers about why I moved. And so I just had this like pre-rehearsed spiel about this needing to set an alarm like every hour or whatever on the hour to just gave that to everyone I work with.
Adeel [6:41]: Oh, interesting. So, yeah, that's the first time I've, yeah. Oh, and by the way, did you happen to use like any ADA, the ADA laws at all? Or was it just, I've got this thing and I kind of need to be on this, you know, be at a separate desk?
Jess [6:58]: You know, I didn't actually have to. I didn't, my boss wasn't really, we, I don't have a ton of interaction with other people. people normally in my job. It's pretty autonomous. So when I need to talk to my boss, one of us would just get up from our desks and walk over to the other. And we were always doing that. There's very little excuse to get up from your desk otherwise. And we like to walk around and stuff. It was pretty easy. And I think he really didn't mind, didn't think twice about it, probably.
Adeel [7:28]: Yeah. So one question I have, and I don't mean this in a, I hope this doesn't come off wrong, but a lot of people are, you know, they're wondering about, you know, they're kind of nervous about telling their boss or whatever about misophonia because it's, you know, it's not usual. But it seems like you, you know, you decided to not deal with the miso and you went with, a condition that's arguably even maybe even rarer or or even more kind of uh or also maybe at least equally unusual as your as the kind of like permanent uh you know as the reason um that you uh told you boss about and then it's also now the spiel that you have to tell your uh co-workers this is kind of interesting that um these are two things that are you know i could see people with uh with um
Jess [8:19]: each of them or you know each of those conditions kind of not kind of wanting to hide one but you chose not me so is there a reason maybe that you chose uh that um and you didn't want to talk about me so uh yeah i'll give you the honest truth here um i i didn't actually apply for the job that i have now i applied for a different job in the same team with the same boss and went through a couple of trial meetings with him and another person. And these meetings would last. And that's before I got this job. I think they were trying to vet me to see if it was a good fit or something. But these meetings were so long and not necessarily exciting or scary. So I was falling asleep constantly in those meetings. So I was like, I'm pretty sure he's going to think this is inarguable no matter what. I don't have to, like, I'm pretty sure he's seen me fall asleep many times over, especially because we used to sit next to each other. So I was like, I'll just make the obvious one.
Adeel [9:31]: Okay. Interesting. So you, right. Okay. So you, you had a strong suspicion that, uh, you were kind of the, uh, kind of a notorious sleeper. And so it would be kind of an easier, easier thing for them to swallow. Okay. Okay. Yeah. If I may rephrase it in that way, but you know, Oh, definitely. Yeah. Okay, that makes sense. Yeah, it was just interesting that, you know, some people might think that the sleeping thing is a more odd quote-unquote thing to use an excuse. So I thought that was kind of interesting. But yeah, there was some history there. And so you just had to go with the sleep issue. Okay, that's cool.
Jess [10:17]: Yeah, yeah. It's a little bit harder to hide, too.
Adeel [10:21]: Yeah, right. So then, okay, so you got some distance now from your coworkers. I mean, were they, you know, were they triggering you quite a bit or that led you to move over? I forgot. Maybe you mentioned that, but I just got distracted by the sleeping story.
Jess [10:40]: Oh, no, you're fine. No worries. Yes, I very much did. I had a lot of triggers at work. I was... sitting at that time like a foot away from a or maybe like two or three feet from my boss two or three feet from another guy that sat across the cubicle from me and then there was somebody sitting corner to me and they all had their own different varying triggers for me i mean my boss would like snack a lot and uh the guy a street or across the aisle from me would tap his foot constantly and then I had the guy kitty corner from me who would uh I forgot what his was I think it was pen clicking or some some other sort of thing like that's pretty common right right for people but but either way yeah it's not like uh you mean even one of those things you had to you had to move um yeah and so and so and so now that you're far away now that you're further away is it uh do you still have to wear like headphones and stuff or is it uh is it pretty pretty manageable uh i i do wear headphones um when i was in the office i was wearing headphones all the time anyway even in the new seat because i can still hear things i mean i'm not close to anybody so it's not right in my ear but i I tend to hone in on it even if I am in the vicinity of the trigger sound.
Adeel [12:12]: Exactly, yeah.
Jess [12:13]: I listen to, yeah, lots of music, podcasts a lot. Yeah, just anything that I can sort of... Any varietal tones or sounds that I can put right in my ear that are preferable to what's going on around me is what I use, so...
Adeel [12:31]: a lot of that. And any visual triggers around the office?
Jess [12:41]: Not anymore. I have three... I've got my laptop and two monitors at work in the office. And those are pretty big. They kind of block out anybody. And I don't notice somebody coming up until they're right up on me. But...
Adeel [13:01]: No, you just get those big BI graphs going and just surrounding your field of vision.
Jess [13:07]: Yeah, and it's a little easier to concentrate with those things in front of you, you know, so much detail. But I do have, working from home, I've gotten a lot of, I've started getting some more of the visual things that I kind of had before, like in childhood and stuff, but uh, like my partner, he bites his nails sometimes. And so I can kind of tell what went out of the corner of my eyes. I see him starting to go for it and I'm like, Oh no, no, it's supposed to happen. What am I going to do?
Adeel [13:43]: Do you tell them?
Jess [13:44]: Um, yeah. Uh, yeah, we are working on that. Um, I, we've talked about this issue a couple of different times. Um, I have only brought it out to, I think, one other partner before and i had a really long relationship before that where there was no triggers um happening with that person ever until um you know the last two relationships and this one uh has uh been particularly understand he's very receptive to people in general i've noticed he's like a very um is very enthusiastic about learning about people, about understanding them, and it seems like no amount of things that I can say that might cause him more work are turning him away. Like he, there's nothing I could do. I feel like that he would be like, Oh, I don't know if I want to be with you anymore for that. I feel like I've thrown so much at him, especially with the misophonia that, and, and he just.
Adeel [15:01]: And the constant sleeping while he's talking to you.
Jess [15:06]: Yeah. It's not quite that severe, but yeah, he's, he's been a pretty remarkable person to have on my,
Adeel [15:16]: side of this like he's just been very willing to hear about it very willing to talk about it he asked questions yeah so I just I think I got extraordinarily lucky with with this one that's great and obviously until he goes at his nails but it sounds like you you probably does he catch himself or do you have to now that you've talked about it with him or do you have to still nudge him a bit or slap him
Jess [15:45]: I have to nudge him a bit. The nail biting thing, I think it wasn't a trigger for me until I met him. He only started doing that pretty recently. When I brought it up, I felt a little bit weird about it because it wasn't something we had talked about before with regards to Misothonia. We had talked about eating sounds and things like that, but the nail biting was new and I I guess I didn't really know how to handle it, so I don't think I did very well. So we're still working on the nail biting thing, but he seems to be trying very hard not to do it. But yeah, so sometimes I'll just shoot him a glance.
Adeel [16:28]: yeah yeah yeah oh yeah we know that um and by uh you know by not handling it or very well um does it were you have you ever like lashed out at this partner or maybe other partners at uh um maybe being triggered um i i don't think i've lashed lashed out at them um my
Jess [16:54]: usual uh my my thing is the flight is my initial response i get angry when i'm trapped but if i can get up and leave it's yeah yes yeah and he knows um we have this like he knows about this and i've told him that um when we're eating or uh when we're in the car sometimes with each other i'll wear an earplug on his side of wherever I am so so or like an earplug in my left ear if he's driving the car and we're in the car for a while and we're eating and snacking on on a road trip or something but yeah but and if you switch drivers you got to change to move the earplug over to the inside and I do yeah I'm actually constantly moving From one ear to the other, and sometimes, I usually have two on me, so I've taken these, like, foam, you know those foam earplugs that are, like, squishy?
Adeel [17:55]: Yeah, yeah.
Jess [17:56]: I've taken those, and I cut them in half, and then I have double the amount of earplugs, and then I just, they're so small that I can put them in my little pocket or a keychain holder thing, and I just have them with me all the time, and they're very easily looked over. It takes a bit for people to notice that they're there.
Adeel [18:19]: Right.
Jess [18:19]: Because they're so small.
Adeel [18:21]: Yeah. Do you find earplugs work well? I mean, they lower the sound, but obviously the sound is still there. And if you're the type that kind of maybe hones in on things, does that bother you still? Or it's proportionally less?
Jess [18:39]: Most of the time when I'm feeling... When I'm hearing something that I, like when I'm hearing a trigger sound, I've got the earplug in on that side and I usually, it muffles it enough where the sound isn't distinct. I think most of my triggers are like clicking kind of, like when I can hear the spit in somebody's mouth moving around or when I can hear them like smacking their food. It's that really high pitch, like sharp. And so the earplugs work really well because they're muffling everything.
Adeel [19:13]: Yeah, they cut the high frequency really well.
Jess [19:17]: Yeah.
Adeel [19:17]: Interesting. I love it for that. Yeah. So, yeah, we'll come back to work and maybe some of your other previous partners, but I want to maybe go back in time to kind of early days for you and maybe around when you feel like it started or you started noticing it.
Jess [19:39]: I started noticing it, like, probably junior high age with my mom around the dinner table mostly. And I just remember kind of always dreading dinners. And we always had dinner as a family, as a family at the table. And it was always quiet. We weren't really like the kind of family that like played music or had football on in the background or anything like that. So there was nothing else to focus on. And I remember just being absolutely, feeling just inundated with this, the most of the, like just the worst of the trigger sounds with the eating and the chewing and the, and stuff like that. But, but it was, yeah, it was pretty hard. Sorry.
Adeel [20:32]: Yeah. Well, no, I was going to say, uh, was it a big family? I know it started with your mom, but were there other people around as well that were potential triggers?
Jess [20:41]: There were, yeah. Well, I mean, we have a small family. It's just me and my sister, and then I have my mom and my dad. And I remember not thinking of the trigger sounds in terms of my dad or my sister, only with my mom for a very long time. And then when I, I think, so I vaguely remember saying something to my mom about it, just sort of casually saying, hey, mom, you're kind of snacking your food. Can you Can you maybe not do that at the dinner table? And then that not obviously working because it takes time to, like, sort of undo a habit or a way of, like, eating, you know, that is so innate to our human nature. And then mentioning it later to her privately and talking, it became, like, a thing in her family. And I don't know that it was necessarily like in my sister's realm of awareness too much, but I remember thinking that it would almost get worse with my dad after I had mentioned it. And I don't know if I was like – I used to feel like it was intentional, but I'm sure – I mean, I doubt it was. He's not like that, but – I remember feeling like, oh, now that I've mentioned it, it's getting so much worse because they tell me to, you know, kind of tune it out or, you know, you've got to learn to block that stuff out or, you know, not focus on it or something like that. I remember wishing so badly that if only I could, you know, if only I could just think differently about this or reframe it or... If I could just wish this away, I would. But I remember just not being able to communicate that very well to my parents, that I couldn't, and that this was a thing.
Adeel [22:45]: So you mentioned it, so you were being initially triggered by your mom. You mentioned it to kind of your whole family, or at least your parents. And then, did you sit them down kind of thing, or was it like, you know, you weren't at the dinner table kind of thing?
Jess [23:03]: You know, I don't remember.
Adeel [23:04]: Was there a lot of prep for it, or was it more spontaneous?
Jess [23:09]: I remember taking a long time to even mention it. And in my inner monologue, I was having a problem, like, kind of sussing out, how do I want to say this? What will it come out like? What is this going to sound like? How is it going to be received? And then what wasn't so great of a reception, I don't remember. I definitely didn't sit them down, and I would have probably said, I'm guessing what happened is we had a small conversation about it at the dinner table one night, and I didn't get the kind of response that I was hoping for. And then probably just backing off, and the next, I don't know how long, I think I moved out when I was 22, 21. Until then, I was probably... stuffing a little piece of a cotton ball in my ear just to muffle the sound. Because that's all I knew of. I mean, when you're a kid, you're pretty much looking for anything. And it's hard to sort of, it's hard to like ask for or know when to ask for help, like professional help.
Adeel [24:25]: Yeah.
Jess [24:26]: I never saw an audiologist until I was an adult.
Adeel [24:29]: yeah well i mean it's interesting that you uh even at that young age you were something you were in you were intentional about wanting to talk to them about it and you were um thinking about you had an inner monologue going like how are you going to talk about it uh you know as opposed to a lot of kids at that age just don't know what's going on and they're lashing out and whatnot so it was important enough to you that you were that you were um wanting to talk about it with your parents and uh And I guess, well, actually, yeah, did you end up seeing an audiologist or a therapist or anything about it at any time until you kind of moved out?
Jess [25:08]: I saw a couple of therapists.
Adeel [25:14]: I mean, you have Dr. Johnson in Portland.
Jess [25:17]: Yes, yeah. I didn't see her until last year.
Unknown Speaker [25:22]: Wow.
Jess [25:22]: So I wasn't even diagnosed with mesophonia until last year professionally. And I remember before then as an adolescent talking to my mom about it enough where she was, she's a very curious person and she reads a lot and she just wants to know all the things. So she saw like a 50 minute, 60 minutes or 50-50, one of those shows had an episode about a man who was a father and they did a show about how he one day was mowing the lawn and suddenly he was experiencing pain from hearing his children's laughter. And my mom, I remember her pointing this out and she was like, we should watch this together. I think this might be related to that problem you have. And she would just call it like sensitive hearing. But I think that got us a little bit, watching that together got us a little bit closer and me a little bit closer to being able to identify it. And it wasn't until like I saw, it wasn't until then that I think I started having it on my radar as the selective sound sensitivity syndrome. And then probably a couple years ago, learning about the word misophonia and thinking, okay, that's probably what it is. And then much, much later, moving to Portland and finding Dr. Johnson and finally being able to identify it indefinitely. And I remember after seeing Dr. Johnson, I went back to my car and got in and just bawled. The relief, at being able to slap a label on this and say, it's not just me, and there are people that are dedicating their careers to studying this, it's legitimate, is indescribable.
Adeel [27:32]: Yeah, I totally understand what you're saying there. And yeah, I think a lot of listeners do. When you find out what it is, you... Yeah. I mean, you think back to like all those, all those moments at the dinner table and all the effects that that has on your, on your life. And, um, yeah. And I mean, all the pain, all the painful moments that you deal with. So yeah, it's a, it's a big revelation where you kind of, uh, I guess you just found out about me. So you had just had the Dr. Johnson appointment last year, but were you kind of like doing little bits of research on sound sensitivity over the years?
Jess [28:08]: Uh, you know, every time.
Adeel [28:10]: And then you found Dr. Johnson?
Jess [28:13]: No, so that's not how I found Dr. Johnson. It's funny, so any time in the last decade that I would be quote-unquote researching misophonia, I was in a state of absolute stress and despair already from having an episode of being just bombarded with trigger sounds. And then I would go on my phone. I'd finally be able to step away or get away for a second. And I would look at my phone or my computer and just like frantically typing away at Google and just, you know, you're already in that state where you're just of full on sorrow that I, I probably only looked at online sources and things for maybe 20 minutes before like shutting it down right away. And when you first Google that stuff, um, sometimes it doesn't, the most helpful sources don't always come up first. So I, I had been missing so much because of that, because I hadn't taken, um, a time period where I was, you know, really well researched. I was fed. I was, I was like not tired. I was out of work. I had free time and researching it. Like I had never done that. So if I had, I would have probably found a lot of the resources that I've found since well before that and been better off. And it wasn't until I was seeing a therapist in Portland, actually, who does a lot of work in cognitive behavioral therapy. I mean, she is the... She is the best therapist I have ever had, and I owe so much to her. But I started talking to her about this, and she independently, on her free time, started researching misophonia. She wanted to understand it. She wanted to know more about it. She asked me a lot of questions, but then outside of our sessions, she would look it up herself, and she found the conference. And she found, I believe she's the one that found Dr. Johnson for me and recommended that I, you know, this is something you could look into if you like. You know, I'll just leave this for you. She's got all these resources, and she'll, like, email me things like, hey, I read this interesting thing, or I heard this interesting thing on a podcast, or I saw this. Just email me. It's amazing. She's been working with me a lot on misophonia lately. That's fantastic. Yeah, it's amazing. She actually found Shadi, who's also in Portland and specializes in misophonia. She found Dr. Shadi. I only became familiar with her over the weekend, so I apologize. I don't remember her last name. uh, she found her and they, they talked, um, and they had, um, they spent time together and Shadi, uh, explained misophonia to, to my therapist and they're like actively working on this together. And, and it, it's just, yeah, it really does wonders to have somebody who is completely in your corner without judgment whatsoever. it's, it's amazing.
Adeel [32:04]: Yeah. And that's good to, um, yeah, that's going to be a huge relief. And, uh, I mean, I've heard a lot of, um, a lot of people come on here and talk about how they're, you know, the therapists have are totally dismissive or, um, you know, they may have already heard about it, but they are, you know, they, they misdiagnose you, but this is the best therapist for the ones that, you know, will go actually do the research like, like yours did. And, um, and this is like another level where, uh, she's kind of like, hitting you up on your free time and getting together to learn about it with other therapists. That's fantastic. What are some of the things that she's working with you on to try to manage your misophonia?
Jess [32:48]: So she spent time with Shadi last week. I meet with my therapist once a week. So I actually won't talk with her until tomorrow but so far she's asked me a lot of questions about sort of the how just how it feels to be in sort of in this in that very high stress moment and we've talked a lot about the fight or flight response and what's going on in the brain when you have a very extraordinary stressful event like that so we've talked a lot about that so far but
Adeel [33:31]: Yeah, she's been awesome. That's great. Going back, I think you were saying over the years you would do these quick bits of research while you were super stressed out. What were the typical situations you were in that were stressing you out? Were they all work environments? outside in the world, on the bus. It was kind of all over the place, or was there kind of some troubled places that were really getting you?
Jess [34:08]: Most of it is, man, I've had a couple of breakdowns after meetings where I've had to be in a room with someone or two people that are eating. And I still haven't, been like brave enough, I guess you could say, to ask that they don't eat in a meeting. It seems like a reasonable enough ask to me, but I just haven't yet. I'm just really scared, I guess. But mostly, yeah, mostly it's like right after I'm like trapped in an environment where I can't get away, where it would be like socially, where I wonder if that would be socially acceptable, unacceptable to ask that they stop making the noise or point it out where I'm too embarrassed to say anything and so I'm just sitting there trapped like and maybe you know sometimes I've gotten like during work meetings I'll get up and I'll excuse myself and probably have people assume that I'm getting my computer charger or something like that and I'll run to my desk and grab my little phone earplugs and then I'll read lips for the rest of the meeting but yeah Yeah, those are the worst moments for me is usually when people are just eating around me.
Adeel [35:30]: Yeah. And being trapped. I mean, I think one way to, one way that helps when you're around people who are eating is just realizing that there is a, just scoping out where the exit door is or, and just kind of like watching how, you know, how long is it going to take for done? Like it's, it's, it's, you know, having like physical and kind of temporal escapes, knowing when things will be done and knowing how you can get out of there. But if you feel trapped, like you're in that meeting, and you have to pay attention. Yeah, that's terrible. What about your friends? Do you tell your friends about misophonia? And how soon do you tell them? I'm just curious how you deal with your social circles.
Jess [36:16]: I haven't told most of my friends. I only actually, following the conference weekend, I saw two of my friends in person um after that and was just absolutely flying like just so excited to just just very jazzed about the entire weekend about how everything went about all the people that i met and chatted with and all of the uh just the sheer amount of numbers that like showed up and uh said i want to know more about this i have this or i'm an ally and i'm here to talk about it
Adeel [36:59]: And was just so... It is a surreal thing to go to. You should go to the... I recommend going to the in-person one, too. It's just, yeah, it's a whole other surreal level. Anyways, sorry, continue. Yeah, you met up with a couple of your friends after.
Jess [37:12]: Yeah, I was just so excited. I couldn't hold it in anymore. I was like, I need to talk to you about neuroplasticity and misophonia and all these amazing people that I met. And I told them, and they were just... reacted exactly as I probably could have expected them to. They've always been extraordinarily accepting people, and that's exactly how they were. They asked a lot of questions. They said, oh, I'm so sorry you went through. You go through this when it's really difficult for you. Is there anything we can do to help? Naturally, they asked if they ever are triggers. Triggers. Yeah, and of course, you know, it was a great conversation, and it was super easy, and yeah, they're just, they're, I have really supportive friends. I found in Portland, you can pretty much say, you can provide somebody with information about you that is maybe a little bit off the wall, and no matter what it is, people are going to be pretty accepting.
Adeel [38:21]: Yeah, yeah. Portland's a pretty open city. No, that's cool. I'm curious, like, what would you... What kind of, like, kept you from telling your friends before? Was it just kind of your natural, you know, not necessarily wanting to tell everybody about everything until you have to?
Jess [38:40]: Yeah, pretty much. I... I've always been a little bit nervous about kind of spilling secrets, I guess, or personal details about myself. But I think, and I think just the way my parents initially reacted that it wasn't real, like it just taken a long time for me to sort of validate this to myself, let alone share how valid this is with other people.
Adeel [39:12]: How are your parents now? Like your dad, I haven't heard about your dad in a while. I know your mom gave you the, you know, showed you the 2020. Are they more accepting now and understanding and accommodating?
Jess [39:29]: No accommodation necessarily. I think it's just a matter of you really can't. I mean, it's hard to change people's natural behaviors. But my mom and I talk a lot more about personal things than I would with my dad. I'm kind of a mama's girl, I guess. But she's very willing to talk about it. I actually talked to her about it after the conference as well. And she was more than willing to hear more about it, hear what I learned. I think she's interested in the brain science behind it. uh, different things we learned about treatments and, and that, um, over the weekend. My dad and I don't talk about it at all. We haven't been, um, I don't think we ever, he and I directly talked about it openly. Um, yeah. Um, but that's okay. Um, my sister, no, not at all. Not at all. Uh, we, Yeah, and she, I mean, when that was all happening, she was probably, like, on her way out of high school and going to college, and she went to another state to go to college, so I didn't have much, I didn't, we didn't have, like, a really close relationship until adulthood, until we were both out, and yeah, until we were both out of school.
Adeel [41:00]: You know, I guess, yeah, well, something I ask, I can't believe the holidays are coming. Well, holidays are going to be a little bit different this year, but do you have any things you do when you get together with your family now to kind of, like, kind of make things a little bit easier for you? Like, you know, eat quickly, volunteer in the kitchen, or, you know, go for a walk outside? I'm sure people are planning their... Well, they might be, you know, happy to stay home and not travel, but some people might still be trapped with a large family.
Jess [41:37]: Yeah. I mean, no matter what, I'll always, I think during a large meal like that, when it's like extended, even if, you know, even if we're at home and we're, it's just my partner and I, he and I will, probably still have, like, a lot of food and have it be, like, an extended all-day eating fest. I'll pretty much have my earplugs in all day.
Adeel [42:04]: Got it. So you'll do the earplugs when you eat with your partner, you got earplugs on? Like, is that pretty standard?
Jess [42:11]: Yeah, yeah.
Adeel [42:13]: Yeah, okay, okay. What other kind of tools? So earplugs, headphones, I mean, I guess there aren't really any other, like, little tricks and tools, but do you have any...
Jess [42:23]: other kind of things that you do or things that yeah make sure around um yeah to kind of kind of deal with this yeah um i i'm usually i usually have my there's on i hate to bug uh amazon but they i i found through that website um some little earplugs, or not earplugs. Oh, there is a company called Eargasm that... I've heard of that, yeah. Yeah, they make some pretty good earplugs that are clear, and those will not always sound the same as the ones I use do, but they're a little bit itchy because they're like silicone or rubber or something. Those are pretty good. They're for concert goers, and they're... moderately hard to see from an outsider's point of view. If they're looking at your ear, they're probably not going to notice it. I like those for going out to dinners, if I'm doing that. Through Amazon, I have these little palm-sized... It comes in a palm-sized case, but they're tiny little Bluetooth earbuds. Made by a company called Ciros. S-I-R-O-S. And I love them. Love them so much. They're not invisible. So that is a problem. You can't wear them in meetings while you're talking to your boss. But they're great for at work. They're not as easy to see. And they have a pretty long battery life. And they can be loud.
Adeel [44:07]: Ciros. Okay.
Jess [44:08]: Yeah. I really like those. Those are my favorite things.
Adeel [44:13]: Yeah, I haven't heard of that one, but I'll definitely look that up. Cool. Well, this has been good. We're kind of hitting around our, I don't know, 45, 40, 45 minute mark. I'm curious, you know, I mean, you just came out of that, well, it's been almost a week, but hopefully you're still on the high. I know I usually am coming out of the conference. Do you have anything you want to tell people about Misophonia, about yourself?
Jess [44:43]: people who are listening to the show uh um not uh not in particular i i think it's just um immeasurably important to have i think therapy is extraordinary um won't solve your problems but it will get you to sort of understand yourself way better than you would otherwise might be able to. It gives you a lot of tools to sort of coping and recovering from stressful situations, which I think is really important. And if you find an excellent therapist, then you're golden and they're going to help you with sources that maybe they can't provide. And I also really can't recommend enough having a partner that is empathetic toward all your little oddities, you know, being able to tell somebody something that you might be, you know, afraid to tell is really important. Having somebody that's very accepting like that is awesome. And especially with friendships, I would think, because, I mean, anybody that you're spending a lot of time with, it's important for them to be able to understand you. And Dr. Johnson actually has these, sometimes she recommended to me, and I think she spoke about this during the conference, these hearing aids that can transmit Bluetooth to your phone and different sounds and music and things like that. I think those are really cool and a great option for people if they're in school or work where they're constantly being in front of trigger sounds or potential Moments where they'll have to hear trigger sounds and can't avoid them. That's really cool. And I think she takes appointments, if I'm not mistaken, through Zoom now. But I'm not entirely sure. But I'm sure she'd be willing to help. Yeah, and I think music can make a world of difference, too. I know some people, they do find triggers in music. But I think... Sometimes, at least for me, music is really helpful. Having a variety of tones and instruments and frequencies in a single song can kind of unravel the jumbled stress ball that is misophonia.
Adeel [47:24]: yeah no you're absolutely right uh yeah it's good to have songs that actually another tip is to have songs that start right away the worst thing is like you're fumbling for some music and it uh it takes 30 seconds to to build up yeah i've definitely been through that i know that that's really great and i like your i like your tip on the um on uh therapists because yeah but if somebody gets to the point uh of wanting to invest in a therapist it's good to know what kind of the expectations are what they're gonna what they're gonna give you it'll be probably more about at this point when there's no cure it'll be more about coping with those um getting back to zero getting back to normal basically how to how to manage post post trigger i would imagine um maybe a little pre too but uh Anyways, yeah, and an audiologist like Dr. Johnson is great if you need to be prescribed those. I think it's like Widex is one of their companies that makes those hearing devices.
Jess [48:25]: Oh, yeah.
Adeel [48:27]: Well, cool. We have Jess. Well, yeah. Thanks again. Thanks again for coming on. Yeah. It was good to virtually meet you at, at the convention. Hopefully we'll all get together and wherever it's going to be next year, but it's always a, that's always a good time. So yeah. Thanks again for coming on.
Jess [48:45]: Yeah. Thanks so much for having me. Thanks for producing this. This is really meaningful. I really appreciate all the effort and, and, and energy and emotional energy that you put into this. It's amazing.
Adeel [48:58]: Thank you, Jess. Hope to see more of you at the convention next year, but at least please consider coming onto the podcast. Remember that interview slots are opened up for March. Grab one today. If you're enjoying the shows, please hit the five stars on Apple podcasts. It really helps us kind of get recommended in other people's feeds. Otherwise, hit me up on Instagram or Facebook at Misophonia Podcast or on Twitter at Misophonia Show. Music, as always, is by Moby. And until next week, wishing you peace and quiet.