Julia - Influencer Navigates Travel and Work with Misophonia

S4 E2 - 3/17/2021
This episode features a conversation with Julia, a professional Instagram influencer and sports product tester who travels the world for her work. She shares her unique challenges and coping mechanisms for dealing with Misophonia while managing a lifestyle that includes constant travel, public interactions, and dealing with her own triggers. Julia also discusses her struggles with medication, self-triggering, and how her condition affects personal relationships and professional settings. Additionally, she touches on broader issues like the genetic predisposition towards Misophonia, difficulties with diagnosis, and the lack of a cure, while highlighting the importance of understanding and accommodation from others in managing the condition. The episode also briefly discusses the use of the Clubhouse app for creating a Misophonia community.


Adeel [0:00]: Welcome to the Misophonia podcast. This is episode number two of season four. My name is Adeel Ahmad and I have Misophonia. On this episode, I'm talking to Julia, a woman who wears many hats, professional Instagram influencer, sports product tester, and much more. She travels the world constantly for her work. And we'll hear about how she handles Miso doing that. She's also one of the few people so far who legit triggers herself in a way that causes issues for her. She also has some other conditions and medications she's juggling. All in all, a super interesting episode. on a pretty unique lifestyle that also reveals some new dimensions on Misophonia that we don't usually hear about. By the way, if you're interested in connecting with Julie, I'll have a link to her Instagram, gem underscore touchdown in the show notes, and also through our own Instagram at Misophonia podcast. Just a heads up, the audio might sound a touch distorted at times. There was a slight issue in recording, but at least I still think I got out all the usual little triggers that microphones pick up. I want to also just lay down a disclaimer that nothing in here is medical advice, especially about medication, as always. It's just a couple of misophones hanging out, so if you have any questions, please seek out a doctor. And one last thing, you'll hear a bunch of references to the Clubhouse app, which is an audio group chatroom app. We've created a Misophonia club on there, and you can search for it in Clubhouse. We'll set up a group meeting soon, so if you're interested, just search for it, click to join, or ask for an invite, and we'll hook you up. All right, now, let's get to this week's conversation with Julia. Julia, welcome to the podcast. Good to have you here.

Julia [1:47]: Thank you so much. I'm really happy that you started this.

Adeel [1:51]: Yeah. And actually, where did you find out about it? Was it on Clubhouse? Because I started following a bunch of people who mentioned Misophonia, and I think you were one of them. There are not a lot of people.

Julia [2:03]: I think it was. Yeah, I think it was Clubhouse. And there still isn't a Misophonia group, I don't think, because you have to host a few in order to start a group. But that would be great.

Adeel [2:13]: Another thing I'd like to ask is where are people located? It seems like you're all over the place. Do you have a home base? Whereabouts are you based?

Julia [2:27]: I ended up in Spain, in Madrid, before the pandemic. I wasn't sure if it was going to be a full-time or temporary thing, but now that all this is happening, I don't want to make a big move right now. But I'm American with a French passport and a residency in Spain. So I've been able to travel quite a bit during the pandemic. So right now I'm in Madrid. I just got back yesterday. So I'm a little bit jet lagged, but handling it.

Adeel [2:56]: Oh, I love Madrid. It's been a while. 20 years since I've been there, but that's cool. That's cool. Also a double passport person here, so it's good to be able to escape.

Julia [3:04]: What are yours?

Adeel [3:05]: Well, nothing as exciting as Canadian and American, but at least... Canada is the hardest one to enter these days, I hear. Oh, okay.

Julia [3:15]: They have the most strict... Yeah, yeah.

Adeel [3:17]: They're the hardest ones to get through. Maybe you want to say kind of what you do for work or kind of projects-wise or...

Julia [3:25]: Sure. Um, I mean, my name is Julia. Now, um, I have an Instagram with a funny handle gem touchdown that at one point I tried to return to my name, but my following disagreed. So that is stuff. Um, and it's even better because obviously there's so much hate in this world. So it's nice to keep a little remedy. I guess like I'll continue to tell you what I do for a living and for a normal person, this is a lot, but for someone who has brain doesn't shut off because of misophonia, it's nothing like, people with misophonia that's the issue is that our brains don't shut off so we're constantly needing to do something yeah so through the instagram i'm able to travel and i do travel wellness health influencing and i have over a hundred thousand followers mainly in the u.s second france third brazil um and i have the ability to travel having multiple passports as i said and having a residency in spain that's a question that comes a lot like as in this past year that's why i've I get to go to all these destinations with no one there. And that's, you know, a trigger for me as tourists and crowds and having people around me. So it's been really nice to go to places that are empty and have no one around me at all. So that's been great. And then I'm also a product tester for sports, mainly ski, surf and golf. with brands such as Nike, Lululemon, and Backcountry, who I'm sure you know. But I've also started to take a stance with sustainable brands on my own accord. So the newest one being OKO Living, who makes beautiful knit yoga mats. It's a really nice product. And in Spain, I started a women's group called arcwell.co. And each evening we have a female entrepreneur speak of their business and the guest learn and also support by buying their products. And it's been a really beautiful experience. But I just sit back and watch and take photos because as you will learn shortly, it's best that I just say nothing at all. And I have a startup, an application, which hasn't started up due to the pandemic. So my patients, especially having this disorder, is tested daily. I'm constantly pressured or asked why it hasn't launched and things like that. But just timing.

Adeel [5:36]: And this past year has been yeah, everyone's had to kind of change their expectations. Yeah.

Julia [5:41]: And like Clubhouse is like doing well. But my biggest thing with Clubhouse is like it's got this big boom right now, but no one's really sure what the direction is and if it's going to go well and if it's just because people are bored. And so I need to have an 18 month gradual growth with an app. That's how an app is shown as being successful. So you can't just have like a big growth and then nothing. so that and yeah that's like pretty much my work background I went to college three times I dropped out because I couldn't concentrate and I was being diagnosed with everything from ADHD to bipolar disease and I didn't want to take any of the medication but I made it through three and a half years

Adeel [6:28]: Almost, almost. At least you learned everything, but you just didn't get the paper at the end.

Julia [6:34]: Exactly what I'm doing actually with the app is art direction really, and that's what I majored in. It actually turned full circle. Do I regret not graduating? Yeah, I regret not having that piece of paper, but I've done a lot of certifications on the side. That's a little bit of my background.

Adeel [6:55]: And I guess, well, yeah, maybe maybe go back to you were talking about and I was curious about travel in the in the last year. I mean, yeah, I love to travel when there's nobody around and I'm not stressed out by tourists. I mean, it. It sounds like it's been amazing in the past year, right? I mean, this is part of your work and now you can go and kind of have your pick of where you want to sit or talk or eat.

Julia [7:25]: Yeah, it just depends on like per city. Obviously, every city is organized differently and you can't believe the news these days.

Adeel [7:34]: Um, yeah, the one other person I've talked to was, uh, on a previous podcast is a standup comedian. So he travels the world as well. And he's got his, uh, you know, kind of, uh, some countries have a, uh, no, um, concept of misophonia or even mental health, but others do. Um, I don't know. Do you, do you feel, are there places that you feel like a little bit more maybe sensitive to it or, um,

Julia [7:59]: or are there some places you fly into you're like oh shit i have to you know i got to be careful of um you know these areas or you know um or the people here are just a little bit louder um well i think like obviously the vacation kind of places like i mean um i was really fortunate right after i had i had covid twice the second time was in march um everyone here in spain had it everyone in madrid oh and um And so the second that I was able to leave here, I went to Greece. I went to Santorini, which I'd never been to before. And I experienced it in a way that no one else has. I mean, there was no one else there. They like upgraded me to this insane honeymoon suite. I was just there by myself, my own pool, like 360 degree views. And those kinds of places, I think, are where you want to go if you have misophonia. People are in vacation mode generally. It's quiet. Obviously, it's not a large city. There's still tourist things to see. And so what I did was I got a driver. So I was alone. I was not with a tour group, even if there were one. which I don't think there was at the time. And I did my own wine tour by myself. Like I went to some sites by myself and that kind of, you know, that's definitely a luxury that like a lot of people don't get to have. But at that time they were so desperate for any tourism that, you know, I was able to get it. So I would say that and, you know, I mean, I am definitely one of those people who will, like, go into a museum and if someone's being loud, like, I'll tell them that they're talking. And so I would like to say that museums are a great place for people in Misophonia because they do tend to be quieter. But, you know, there's that one person and that's really... Who's coughing.

Adeel [9:48]: Yeah, exactly.

Julia [9:49]: Yeah, who, like, ticks us off. It's like, in the crowd of a street, I'm not so bothered. It's when it's quiet and you hear that one person... making a noise or like even their laughter. Unfortunately, it's a trigger for me and I don't have the ability to not express myself. So I express myself as kindly as I can. You know, like we're in a museum and it's a place to be quiet and enjoy the art or however I decide to address the person. But it's not usually appreciated. So but I would say most cities to the museums, parks, you know, but Generally, yeah, quiet, vacation, destination is ultimate for someone with misophonia.

Adeel [10:31]: Yeah, so your triggers are probably the usuals, like the mouth-induced, mouth-instigated kind of ones, I guess, yeah.

Julia [10:42]: I have a bunch. I mean, definitely that's the first one, which I think everyone, that's like the first one, right? When people are chewing and making any noise, any tapping, keyboard noise, walking on the floor bothers me, unfortunately. I'm really bothered by a lot of things and medicated because of it. So unfortunately, even my own sounds, my own breathing.

Adeel [11:08]: okay yeah yeah that's uh well let's get into that because that that does come up where people ask like uh well actually misophones sometimes they're worried that okay i'm developing more and more triggers as i'm getting older am i gonna you know be unable to hear myself um so that um but most people aren't super bothered by them by their own sounds so you're saying that um are you equally triggered triggered by your own uh sounds as as other people not

Julia [11:35]: equally triggered. It depends on the day. And I should probably get into this too. Because I have misophonia, I have something called sleep paralysis. I have it really badly. So It's not just a daytime thing for me. It's a nighttime thing as well. And my brain just never shuts off. So like I have a very low ability to hit the REM stage, which is so important of sleep. So I'll go a few days of not sleeping at all and then be able to hit the REM stage. And then I wake up and my body doesn't wake up. Um, so it's something called sleep paralysis and people get it like once in their life. Um, people who have drug and alcohol addiction will find that they have it, um, occasionally, but this for me happens anytime I could take a nap. Anytime I sleep in, because those are the times that I'm so exhausted that I have to do those things. And yeah, so it affects me like every I mean, my breathing when I'm sleeping, it affects me. I use an occlusal guard, which I think is really helpful. It's a dental guard for a night guard. But I actually use it as much as I can during the day because I tend to clench my teeth. Because I'm so... irritated all the time by things um unfortunately and okay so your physiological reaction it's a lot of it is yeah clenching because you're holding it in yeah all of us do until you have to yeah yeah i'm trying to hold it in you know i try especially obviously in public places but and with strangers um but you know so at night i have to use um earplugs an eye mask i put my hair back in a certain way i sleep in a certain like everything's routine that really helps me um And the mouth guard really, my dentist is like, anyone who has this should have this mouth guard. This really helped me. In the morning, I feel less tired and less anxious because my jaw is much more relaxed. And during the day, I found that my AirPods really helped me in the same way that they help me at night. So when I'm running, I don't have to hear my breath. I don't have to hear my feet when I'm running. And I do agree that the older you get, the worse this gets. So it's really, really important to see a good shrink and get medicated I really unfortunately think that the only option with this is a little bit of medication I mean you can do and I have my yoga training like don't get me wrong like I drink a smoothie every day I'm so healthy I hate the fact that I take medicine I don't take it every day but I have to in order for myself to be a normal person and get regular sleep so I'm not even more irritated and And I think basically in the morning when my routine goes off, you know, I usually wake up in the morning, I drink a glass of water, I go for my run, I feed my dog, I run the shower, I drink a smoothie in that order. And if any of that is out of order, then I know that I have to take this medication. So I take a quarter of what I'm prescribed. And that does it for me. There's some days where I have to share workspace. Forget it like that. I know I have to take something.

Adeel [14:44]: Yeah.

Julia [14:46]: So even if someone's working for me, like I just don't want to be I don't want to be a jerk. So I'm just, you know. So I preemptively take it. And then at night, I'm prescribed Klonopin. I take the smallest dose. And I'm really lucky this week, actually, to have jet lag. This week, I haven't needed to take it. And it's a very addictive medication. So if you have an addictive personality, you should make sure to tell your doctor this because you should not take this medication if you do. So this week, I don't have to take it, which is great. And eventually, I'll have to start taking it again. And you basically build up a tolerance to it. So you start with half a pill and it goes to a pill and you know one and a half pills two pills and then at that point you really want to you know go back down to zero for a couple days and try to you know get through it on your own um well that's just what i suggest but

Adeel [15:36]: Yeah, no, that's interesting because, yeah, you hit upon a couple of things there, like you try to reduce your stress as much as possible. You get that routine going because for a lot of us, it's like just being able to control or knowing that we have control over our environment is a big part of like um, uh, you know, not flying off the handle so much. Um, so those are, those are great things. And then, then, yeah, that's, that's interesting. And then, then I guess once you have those down, you can decide how much medication or, you know, what do you want to do?

Julia [16:07]: I was doing everything I could and it got to the point that, and I, I see a therapist, um, And there was a while in my life I didn't see one at all. And I find him to be really helpful to talk to. I see him via Skype. He's in the US, so he's American. like our American angst, I guess. And, you know, it got to the point that I was running and doing things that were healthy. It wasn't that I was going to some other vice that someone would deem as unhealthy. It's like alcohol or cigarettes and things like that. I would run twice a day. Like I would run in the morning and then I'd feel anxiety at 6 p.m. I would go for a four-mile run again. And that's not healthy, even though it's quote unquote healthy, there is too much of a good thing. And, um, and I was like losing weight drastically. And, um, you know, there were certain things that was just like, it was obvious that I needed more, a little bit more help. Um, but again, as I said, this is like something that a doctor should advise you. And also, um, Again, there's so many different medications. I went through a few months of trying every type of medication for sorts of anxiety disorders that you could try or seizure disorders. And some of them made me depressed. Some of them made me more anxious. Some of them made me more irritable. So every single person is so different that I couldn't diagnose someone.

Adeel [17:27]: So, and then the therapist is different than your, the shrink would be the one prescribing the medication, right?

Julia [17:33]: Yeah, the therapist is who you talk to and he thinks I'm a delight because I always have these like fabulous stories of... know being you know just like ridiculously irritating absolutely nothing um so but yeah he's great did both of them um did um did everyone know about miss funny in advance or was it something that you had to tell people okay okay no they absolutely knew um and the shrink i have here is from germany she's a woman and she knew about it and um she knew right away that i had it too because Or she knew that I had some sort of obsessive compulsive on the spectrum, something because of the way I was looking around her room, I guess, or something she was saying. So she had to work with my therapist because like I picked her up much later on than my therapist. And I just wanted them to discuss to make sure I wasn't. explaining things the wrong way. I'm not a doctor. Um, and he is very knowledgeable about the subject. So, um, or was it like, no, no, no, not at all. Not at all. Um, yeah, no, not at all. He's actually, his base is actually a sex therapist and that's not at all why I was seeing him either. He just came as a recommendation from a friend some years ago. And, um, and he does, I think his therapy works for me because the kind of therapy offers is more assignment based like this week, make a list this way versus this way. And for someone whose mind doesn't stop working, it helps. It's not really it's not much of an emotional thing. I haven't cried yet or anything. I'm really looking forward to that. But it's more pragmatic, I'd say.

Adeel [19:16]: Yeah. Yeah. Interesting. Yeah. And it goes back to like getting routines, having control of the environment. So I guess maybe let's go back to kind of like when you kind of remember this all maybe starting for you. How far back do you remember being triggered?

Julia [19:36]: Yeah, I know that was like the question that you'd ask on the questionnaire. I'd say my earliest memories. were I mean, I still have friends from the age of three, which is amazing. And I definitely was somewhat of like the class clown, I'd say, because I would say things that were really direct. Um, and then kind of have to laugh it off, you know, because you're probably being a jerk. Like, definitely.

Adeel [20:02]: You're like, oh, I went too far. I better laugh it off. Yeah.

Julia [20:06]: And so everyone would laugh with you, but I was never, I was, it wasn't like, I wasn't like this typical American high school bully. I went to like an all girls school and, um, and then I guess there could have been bullies there as well, but luckily we had like a really good small school setting. Um, so I was friends with like everyone with every type of background. It wasn't like that, but. But I remember those kinds of things. I remember saying these things, and I remember being scolded. I remember the first time I was scolded was... by my father. Um, he had an artist friend who had an eye that wasn't going the right direction or something. And I just remember saying something because the non perfectionism of his face or something really, I was very young. I mean, I was like six or seven. I would, this wasn't like I was a teenager, like having an outburst at somebody's deformity. But I remember like being pulled into the kitchen and being told that I couldn't talk this way to people. And like, And like from then on forward, I knew really what I was saying and doing was wrong. Like as in like it wasn't the social norm, but I couldn't help myself. And it wasn't like, oh, ha ha, like your face looks like this. It would just be like asking questions about it or like crazy curiosity, I guess, like unnecessary. Like you can't take me to a cocktail party even now if I don't know anyone. It's a disaster. So I'd say those are my, it's a really general first memory. I mean, and I did have sleep paralysis starting at a very young age with like, which was diagnosed as night terrors because I couldn't express myself. yeah yeah well i couldn't express myself like i was like five years old and i couldn't be like oh well my brain wakes up before my physical body like i mean some five-year-olds topic that but not me i wasn't like the brightest five-year-old and uh so i think i was just like i feel like i can't move or whatever i don't know what i said and this is not like in the last five or ten years so I don't know if there was that much knowledge on misophonia and sleep paralysis. Um, and so they just thought I was having terrible nightmares because my parents were getting divorced. So you're, you're constantly getting this like therapy and the shrink advice, which I was so blessed to have, but they were all going the wrong direction for me. Like no one was actually listening to really what was going on with me. And I was being misdiagnosed constantly over and over again for many years.

Adeel [22:34]: So, yeah. So yeah, it seems like a lot, a lot of things were kind of going on there. Um,

Julia [22:41]: and uh and then when it's kind of maybe sounds come in the picture or was that always kind of part of that part of the thing going back to almost h3 like that's always one of the things you noticed okay yeah yeah it's always been a thing and um that's another thing i actually remember again the same lines of getting into trouble because i was misunderstood and being at dinner and having to leave like i would get up on the table um i would like throw a fork on the table like I don't nothing like I wasn't violent towards others but you know I was aggressive and I would have to leave the table because I couldn't deal with someone making noise or I always thought that someone was chewing with their mouth open or their mouth full and um and I do think that I actually was bothered by my own sound even then a little bit But yeah, that's what I remember.

Adeel [23:30]: Was there specific people that maybe triggered you more than others? A lot of people find their mom or their dad or a grandparent maybe is kind of the initial trigger and then it kind of grows from there.

Julia [23:44]: I don't know. I actually think that my dad has it.

Adeel [23:50]: That's not uncommon either.

Julia [23:51]: Yeah, I think a lot of things are genetically predisposed predisposition.

Adeel [23:59]: Something like that, yeah. We get it, yeah.

Julia [24:02]: It's fine, yeah. Now I'm stuck on that word. I guess my mother maybe a little bit, but for me, it's really strangers. Anyone I don't know, it's not possible for us to be sitting next to each other, even today. It's not... even um even having a serious relationship with somebody it's not possible for them to be typing their computer at the same time as me or i can't do it i just can't do it and um right so it's not something that's like it's really been like that for my whole life yeah

Adeel [24:35]: And then when did you find out that, you know, obviously other things have kind of more, have had more awareness earlier on. When did you find out about misophonia? Like, when did you hear that it was a thing, had a name?

Julia [24:49]: Only in the last five years. And I only was... a hundred percent sure I had it when my therapist was like, you have it.

Adeel [24:58]: Oh, okay. Yeah.

Julia [24:59]: Because I'd been diagnosed so much with so many different things and everything sort of made sense, but none of the medication made any sense. And once you're properly diagnosed with whatever it is that you might, whatever disorder you might have, it's amazing how much help you can get. um and so i kind of ignored it for many years because i was like i don't have adhd like i'm able to accomplish a zillion things so i don't have adhd like i don't have mood swings it's just a constantly like this right right right hey yay awesome no mood swings it's just constant 11 yeah

Adeel [25:38]: 11 on the dial. Um, okay. Yeah. So, and so what are, um, what are some, yeah, what are some of the things that, uh, your, your therapist, anything like specifically misphonia related that, that, uh, that he's kind of, uh, worked with you on?

Julia [25:53]: Um, I mean, there's no, there's no cure. So it's just like all the usual, you know, I just have to think about it. I think, um, I think we were sort of talking about it in relationship wise terms about, how hard I am on people. And it takes like a really strong person to be around someone like us because they have to understand that it's not about them. And this sounds like the most selfish disorder ever.

Adeel [26:24]: Yeah.

Julia [26:25]: Like I can be a jerk and like be irritated by everything, but you can't be irritated by my, my irritations. Like I need to be organized the way that I am organized. Otherwise this just won't work. There really is, unfortunately, in my case, I feel no way around it. Like, if someone enters my house, the things have to go this way. And, like, noise levels and things like that. And what I find when what really has helped is, like, eating, especially in a couple or even amongst friends, is music really helps me. But it has to be the music that, like, I choose. Or, like, music that I like. So I'm irritated by... so much. Um, and so I think it was mainly to decrease the stress. Um, so, and as I said, I was running on empty, running in the morning, running at night and then not sleeping while, um, and the first thing that we want to take care of was sleep. Um, and then we realized, so once I got to, I took care of the sleep and it was prescribed to call on a fitness or taking that. And I realized in the morning that I was waking up, waking up, really you're like i noticed it wasn't just a night thing i needed just to sleep but it was actually a day thing as well um and that in the morning i could tell really quickly if i needed to get medication or not um it's like today i didn't take anything yesterday i didn't either um so yeah yeah and uh and how um so when you are running like other people uh whether we know whether without medication like are you or when you meet new people are you um when does it come out basically do you wait for a trigger or is it like well here's here's my uh here let me text you my list of demands kind of thing or uh um i'm just curious how you yeah like i think my old friends even my new friends quickly are able i don't i mean i try to explain the disorder thing but i think that especially new people rather just they understand who you are kind of and um yeah and, like, appreciate you for being a bit different.

Adeel [28:27]: It can become a filter. Yeah, I mean, a filter of who's, you know, who's worth keeping around if they... Yeah, and I think sometimes it's funny, like, having us around. Like, you know, like... Well, humor is a great... If you can turn it into humor like you did at that young age, like, humor is a coping mechanism that's worked for a lot of people here.

Julia [28:47]: Yeah, so, you know, so I'd say... I mean, if it's a large gathering, for instance, I was at my friend's birthday a few weeks ago, like I'll take something to mellow out so that I'm not so boisterous with people. I don't drink much alcohol because I find that that makes it even worse. I've cut back on that too yeah I think that's the first thing for anyone like I mean anyone in this world really I mean I know this past year it's been tough and we're all bored it's nice to have a glass of wine but any more than that like it's not happening with me I know that it's at her birthday and I said something that was like kind of weird to one of her friends who was older, like much more dignified person, like in her 40s with kids, you know, and I can't even remember what the topic was, but it's probably like sexual or something inappropriate. And and like I've learned how to like sort of like I realize what I say and then I just sort of roll back through and let them speak for a while. And I just like don't say anything. And then I hope that they forget. And in this case, they did not forget. Like this was like the gossip of the night, like whatever I said. And, you know, these things happen and I'm a full blown adult, you know. So it's like embarrassing a little bit. And I'm like, oh, is my friend going to forgive me? And she wasn't even mad. My friends weren't even mad. But you think that they are. So they've had like more of a laugh out of it than anything. Yeah. But, yeah, like dinner table settings, like wedding settings, they know not to sit me around strangers or who to sit me around, like who can be, like, respectful or whatever. I mean, it just depends on how much or how much time I spend with people for them to know, yeah, know about what's going on with me or my character, I guess you could call it.

Adeel [30:39]: Yeah. And, and have you had, I mean, have you had kind of a few, I don't know, maybe Miss Funny related blowups through your life that are kind of, that you kind of remember as being interesting milestones? Is it all the time or is it top five?

Julia [30:59]: Oh my gosh. For me, it's an all the time thing, you know, and just having, so I guess as I've gotten older, I don't know if there's a top five, but, as i've gotten older i've been able to like get myself out of the situation much faster whereas when i was younger i was like no like i would try to correct myself or um i feel really really down about myself um for much longer about like what i said or my reaction and like why am i not normal and not knowing what i was controlling but as i said before like once you figure out what's what's wrong with your brain really like what your disorder is like you're much more accepting towards yourself which is so nice but even just an instance the other day I was on the airplane and this woman was like making a lot of noise in front of me like front left seat so not even right in front of me and she was wearing a see-through mask and she was wearing like a Cartier watch like in her 60s she looked like a classy lady and she's French so going back to this whole COVID travel thing and I was like do you mind just like being more quiet? And like, and I also topped it off, like, do you mind putting on like the appropriate mask? And she was like, which means like, go after yourself.

Adeel [32:11]: I know.

Julia [32:14]: To me, on an airplane, like we're on an airplane, there's no way where you can go. And I just like kept quiet. And then I just like looked down. I was like, okay, like, like, but in another time, I probably would have continued with the conversation. But I think, there's a difference between people who are outrageous, like jerks and the people who have misophonia. I think that like, we all realize like, because we've been going through this our whole lives or however long, most people, their whole lives, you really quickly are able to realize what the next, like, see what the next step, which way this could go, where it can go really, really badly. And like, how this woman just continued to yell at me and this plane gets grounded. And I don't know what, or like, I just, sit quiet and just like put my mouth guard in put my airpods in like try not to see her because it's not just you know it really i can actually like hear things that aren't even there like if she's eating and i can just see her mouth and i've already heard it even with my visual triggers yeah yeah a lot of us have that i feel it you know i feel her eating and um so Yeah. So no, this is a constant thing for me. And, um, and as someone you were saying asked if it gets worse as you get older, I think it does. And I think this year did not help anything. Um, I think like circling around in our apartments and, um, I mean, it depends where you are, but yeah, I think that as we get older, we get, you know, we know what we want in general, just as a normal human being, even without a disorder, we know what we want. We have our lives more organized. So it's like when things are out of order, even, the older that we get, the more control we have, you know, the more financial stability you have, all that gives you more control of your life. Um, the more, the less these things are acceptable, you know, more and more so.

Adeel [34:02]: Right. The less they're acceptable. Right. Yeah. Cause it's like, uh, yeah, it's, it's, yeah, it's really interesting how that, uh, that balance shifts as you get older, you can get out of situation, but, um, The fact that something goes wrong when you do have more control makes it somehow worse, I guess. Yeah. No. Did you, and growing up, so do you feel like, I know, I realize you have a lot of stuff, you had a lot of stuff going on, but has misophonia maybe in particular, like, caused, maybe damaged, like, family relationships at all or caused more distance, you feel, than... A hundred percent. Yeah. Yeah. Yeah.

Julia [34:41]: Because there's a lot of times where you could have been quiet, you know, and never like and also I mean, it makes you you're stubborn about it because there's really, as I just said, I mean, it sounds it does sound crazy that I'm saying this, that for me, there really is no there's no way around it. This is something that I have to live with for the rest of my life. It's not something that just like goes away. That's why when I said it's really important to get your diagnosis because like bipolar disorder It's like sometimes you might be like this or sometimes you make this is for me every minute of my day Like I could be triggered like even with the healthiest morning that I'm having and especially I expect So much more from those around me and that being my family my loved ones You know I expect that they would understand, be more understanding and things like that. So, yeah, definitely I've taken time. I guess part of it, too, is like I find this a great platform having a podcast that you have because I also don't like socializing much. And that includes family as well. Like I can only take so much of being around people. It's exhausting. And I know that that's the case for a lot of people and families. but even more so for us. And so I do take breaks. I live very far away from my family. And people in Spain are very relaxed. So this is actually, I would definitely say that Madrid is a great place for people in this phonia. Cause like no one's up to anything. It's very slow paced.

Adeel [36:18]: You got that afternoon siesta. I think it's what it, what it, what it's called. Yeah.

Julia [36:22]: You have a siesta. Oh, people do it. I can't do, I can't, I haven't gotten to that point yet.

Adeel [36:28]: Yeah. Yeah.

Julia [36:29]: But like, you know, if you get up at eight in the morning, like that's crazy early here. Like you're supposed to get up at 10. You're supposed to have lunch at two. Everything's two hours later. Um, right.

Adeel [36:39]: So it's at midnight and yeah.

Julia [36:41]: Yeah. So if you've missed a pony and you have to have your routine in the morning, like I do, like you get that done and then everyone else wakes up and no one here exercise or not. No one. But most people who don't exercise like Americans or Canadians do or I don't know, somewhere else. But so by the time they're waking up and going to work like you, you're energized and you're, you know, your day is going to be off to a good start. So, yeah. And I don't have the drinking habit. habit so unfortunately my nights are not the late Spanish nights but I would definitely say this place is great and plus it's got a really much older generation that lives here so they're all like much quieter and gentler and

Adeel [37:20]: Yeah. Right. And how did you, um, did we talk about, did you sit down with your family and tell them about misophonia? Like, I'm curious how their reaction was and, uh, and you know, what happens around the holidays, like Christmas or Thanksgiving?

Julia [37:35]: Oh man. Well, uh, my family is a family full of disorders. Um, so like we all have very different personalities, except that I really think that we all have share some form of um i know all of us actually i'd say like half of us share this i have one sister who's extremely sensitive and so like with her it's great because she's very quiet speaking she actually has like a whole wellness kind of podcast We're very different personalities. And so I'd say that I think that I just told my dad in the kitchen or something. And my stepmother was around and she was saying that she has it when he eats an apple. And I was like, no, no, no. Like you can be annoyed when someone eats an apple once in a while. But like every little sound. And like, as I said, even after the sound is over and you put your AirPods in, it's like, you can't help, but be distracted by that, by that noise or whatever it is.

Adeel [38:36]: Oh yeah. No, it's, it's, there's definitely a, a period of coming down from that trigger. Definitely. Yeah.

Julia [38:43]: So I think I addressed it the wrong way. Cause I was like, and I was like, I have misophonia and I think you have it too. And you know, my dad's in his seventies. He's like an American man. I'm like, they're not really into these kinds of things um so i don't think that part was appreciated so i'm not really sure i was listening to that that much or that well um but it's funny because like he stomps around and he'll like slam a door and like do these things that you know i don't stomp around i mean i'll definitely have a reaction maybe like slamming a door but i don't have a door to slam luckily in my apartment but um but you know these kinds of things and i'm like this is exactly like what i'm doing so like it'd be nice um know maybe you should just like tell your therapist or whatever i'm just trying to help you out you know my mother um i told her and i don't you know i think that she agrees i think she's happy that i have a diagnosis and that you know that i've been able to help it with doctors and things like that yeah yeah

Adeel [39:49]: Well, actually, yeah, that brings a point. So the diagnosis has obviously helped, like, get you medication, tips. Has it helped... like get accommodations anywhere? Like, well, I guess you're not in school right now, but like, you know, some people have been, or like, you know, you're not in an office, but some people have been able to use that to maybe, you know, get special treatment, maybe get their own room or be able to take an exam separately. I don't know, in the kind of work you do, have you been able to get accommodations anywhere with your diagnosis?

Julia [40:25]: Not with my diagnosis. But yeah, that would be awesome. Not with my diagnosis. Like I don't say, oh, I have this and this and this. But I have a dog I have and she's actually she's a service dog. She's not an emotional service animal. So an ESA would be more appropriate for misophonia. But because I have my sleep disorder, which is considered a seizure disorder, I'm able to have a service dog. And so I trained with her when she was a baby and she travels with me on airplanes. It's amazing. She's like the best behaved dog. So I have her. I don't have to explain myself, which is great. But the thing is that, actually, it's easier to get a dog on a plane if you have an emotional disorder than a physical disorder, which is weird. So, like, if you have an ESA dog, it's easier, emotional service animal, it's easier than a service animal. That's one thing. And the other thing, too, is, like, when you go to a hotel, you can definitely, like, you know, I just think that, like, being polite is the number one way to go. So, usually, actually, even before I go to a hotel, I'll write them and I'll say, like, hey, like, you know, I'll even make up a story rather than telling them that I have a disorder, which I've never even thought about telling them that I have this, um, because I'm in Europe right now and I don't know, I don't know how forward thinking some places are.

Adeel [41:47]: Um, I've heard some of them are not. So I'll just, yeah.

Julia [41:53]: So, but, but I think if you write them a polite letter before you got there and just say like, even if you're making it up, but I have not making it up, just being like, I've been working really, really hard. And like, this is the only vacation I'm going to get to take or, Or like for me, a lot of the hotels I get are through influence work, so I don't have to pay to stay. I'll just request to not be near a room with children or something like that. I mean, I can stay up all night if I hear a noise. So yeah, that ruins my entire trip.

Adeel [42:20]: You know, you have legit, you have legit, legit reasons other than, yeah, even other than the misophonia. So, uh, that's, that's interesting. Yeah. I hadn't heard, I hadn't heard of anyone doing the, uh, writing a letter or calling in, in advance and, uh, just asking for, for any kind of, uh, cause yeah, usually, you know, I think usually they will try to accommodate if they can. So that's, uh, of course, like why wouldn't they want you to have a good time?

Julia [42:44]: You know, it's just like being polite, like being extra nice and like being clear. I think that goes with anything in life.

Adeel [42:51]: Well, I guess we're coming up to an hour. Maybe we should start to wind down, but I'm curious. After this call, we can maybe try to set up a clubhouse meeting or something later. For sure. But is there anything you want to tell folks, maybe internationally or... or, or you were here, uh, just about, um, oh, misophonia and, uh, advocacy or, or, or just tips in general.

Julia [43:22]: I mean, I guess one is, um, it really, as I said, it really helps if you think you have this or something else to see a good doctor and make sure that you're, you're diagnosed correctly with whatever it is, because there's 1 billion medications out there. there's a treatment for everybody. Every single person on this planet is different. So again, like it's really important that you are given a course just for you. Um, and staying on a routine is like, I would say my, my number one tip is staying on a routine. Um, and, uh, yeah i mean i don't know about advocacy i don't know i mean again like i never even thought about telling a hotel that i had a disorder um because they probably would have arrived they would have thought like oh where's this invisible you know in france it's like you can't have a dog unless you're blind or deaf so i have walked through a park wearing sunglasses before you know not fully right just thinking that maybe if i get stopped maybe i can get away with it you know, but then you have to, you know, and I've had this happen. So not with misophonia, but with my sleep disorder where I've had to explain to a, to a French policeman about my sleep disorder and be like, I actually have seizures and at night and I'm more like, this is a seizure disorder or whatever it is. And then they're understanding, but that takes, you know, at least a good 10 minutes of compassionately expressing this to somebody.

Adeel [44:43]: Right.

Julia [44:44]: Um, so it's unfortunate that like we have to take our time to do that. Um, but you know obviously the more that we inform others the more people will become more aware of this um and this isn't like the worst obviously there's so many worse things that could be going on with you or you know this this isn't something that like is something that can be fixed um but there's ways to make it better for like your everyday living you know

Adeel [45:09]: Yeah, that's interesting for advocacy. So a few of us are talking about putting together training or seminars for HR to be like, here's how you should maybe design your work environment or design some policies at work to make it easier for your employees who might have misophonia. I had not thought about the hospitality industry. I think that would be super, you know, maybe have something that they can throw into a page of their, whatever their, the guest book in their, in each room or just kind of train people to like look out for this.

Julia [45:47]: I mean, it's called respect in my eyes, which I feel like everyone is lacking. It's crazy.

Adeel [45:53]: Yeah. Yeah. No, no. To all of us, it definitely, definitely should just be that simple. But yeah, But the rest of the world is slowly coming around, hopefully.

Julia [46:05]: I think there's a couple of Asian countries that are respectful and the rest of us, which is like, I just, yeah. The chewing with the mouth open. I mean, I know in Japan it's illegal to walk and eat your food at the same time. And obviously that doesn't really make sense.

Adeel [46:20]: Wait, did you say it's illegal to walk and eat your food?

Julia [46:24]: Yeah.

Adeel [46:25]: Oh.

Julia [46:26]: which is makes sense sort of like one, they want to put their business in the restaurant. I mean, right now things are different, right? Cause of the pandemic. So there's some cities like in Paris where you could take out your food and then you can't sit in the restaurant. So you have to walk and eat your food or you have to sit in the park. But, um, but those kinds of things like where like you should only eat where you're supposed to be eating, you know, like shouldn't be eating at a desk. There should be an area where everyone has to go eat and, that should be instilled for work environments. It's just, anyways, I mean, I think now it must be sort of pushed because you don't want someone with their mask off, you know, spitting their food everywhere all over the computer. It's just gross. So I think that, I don't think these are hard things to instill really, you know, I think, I guess, as a boss to notice who has a twitch or not and put them away from the people who have misophonia. The tapping of the foot, the pen, the chewing of the pen.

Adeel [47:24]: Well, yeah. And if bosses want to bring their employees back from work from home, I think they're going to need to step it up a little bit at work and accommodate some of these issues.

Julia [47:36]: We're talking about a TV show here. I mean, I think it would be hilarious.

Adeel [47:39]: Julia, I want to say thanks for coming on and sharing your story. A lot of interesting things here. And yeah, hopefully we can get the Clubhouse audience listening in as well. Maybe we'll find some people we can help.

Julia [47:54]: Yeah, thank you so much for hosting this. And I'm sorry if it wasn't super entertaining. But day to day, I think it's pretty entertaining for me sometimes.

Adeel [48:05]: Thank you, Julia. Hope you're still healthy and doing great in Madrid. Remember, I've got a link to gem underscore touchdown on Instagram and in the show notes here. If you're enjoying the shows, don't forget to leave a little review and hit the five stars on Apple podcasts or anywhere. Music as always is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [48:35]: Thank you.