Elise - From isolation to community: A misophonia journey

S1 E17 - 3/4/2020
The conversation features Adeel and his guest Elise from Portland, Oregon, discussing their experiences with misophonia. Elise, active within the misophonia community, shares her journey from a challenging childhood with unsupportive parents to discovering a supportive community and the latest research into misophonia. She talks about her early struggles with sound and visual triggers, feeling misunderstood and labeled as 'crazy', and the isolation due to misophonia. Elise highlights the importance of community and awareness, reflecting on her participation in the MIS-20 convention, running bi-weekly video chats, and her time working with the Misophonia Association. The discussion delves into the challenges of misophonia in academic settings and professional life, coping mechanisms, and the evolving understanding and research surrounding the condition. They also touch upon the potential implications of misophonia under the Americans with Disabilities Act in the U.S., suggesting a slight hope for societal and medical acknowledgment and support in the future.


Adeel [0:01]: Welcome to another episode of the Misophonia podcast. This is episode 17. My name is Adeel Ahmad and I have Misophonia. Elise is my guest today from Portland, Oregon. She's a fellow Misophonia sufferer who's been pretty active in the community, working briefly for the Misophonia Association. and also running a bi-weekly video chat with misophones from around the world. I met Elise at the MIS-20 convention last fall. We'll talk about that, we'll talk about raising awareness, and really dive into experiences dealing with miso on a daily basis at work and just in life. I'm a little late sending out the latest batch of stickers, but please keep emailing me your mailing address and I'll send you some. You can email hello at missiphoniapodcast.com and also just let me know what you think of the podcast. Now, here's my chat with Elise. Welcome, Elise, to the podcast. Good to finally have you.

Elise [0:56]: Yeah, thank you. I'm excited to be here.

Adeel [0:59]: Cool. So, yeah, we've known each other from the convention. And, yeah, I think it's the first time we're talking since the most recent convention. How have things been so far?

Elise [1:12]: You know, going to that convention, and I worked a little bit of it, it's kind of emotionally all-consuming. I don't know what your experience was like, but, you know, it's really cool to meet a ton of people that, have the same thing and we don't have to explain each other. We can just kind of give the look, the stare, the glare and start laughing. But it also brings up a lot of emotions for me, especially seeing the younger people, you know, kind of a little bit of regret. I mean, I wish my parents had been more supportive and that we had known at that point what was happening, but also I'm a little jealous too, you know, because they have this whole community. So yeah. Yeah, it's kind of mixed emotions. It was great, though. Overall, it was, I think, really positive. I'm hoping you had a similar sort of positive experience.

Adeel [2:04]: Yeah, that's why I keep coming back. And that's kind of where this came from is trying to recreate those lobby slash lounge conversations that we all have, which are at least as good as the sessions that are there. So just trying to keep them moving forward and bring it to other people. Because, yeah, it's always surreal and a huge sense of relief and memories that you can think about when you're out.

Elise [2:31]: also um to kind of you can use those memories to push out the um the visions of strangling people in everyday life so and and not feeling so strange that we all have them i mean trying to explain it to someone without misophonia it you know i don't i don't see myself as a violent person but i do have those urges right

Adeel [2:53]: Yeah, it's far beyond the classic annoyance. And yeah, it's also interesting to just kind of be around people that you kind of have to now think about not triggering. It's interesting to see the other side a little bit.

Elise [3:07]: That's true, too. We were talking about that. We have a video chat every other Saturday, a few folks, and one of the people mentioned that he had accidentally triggered some people, and he felt terrible about it, but it was also good to kind of be on the other side of it.

Adeel [3:23]: yeah exactly exactly so um yeah so let's let's go back then to uh i don't think i've ever like heard your story of like growing up and whatnot um what you know around when it when did it uh when did you what are your earliest memories of it you know i don't have a i don't have a number like an age but i just remember as a teenager starting to be aware that certain sounds bothered me and it was mostly

Elise [3:48]: eating sounds. I grew up north of Seattle, up by the border in Washington State. And, you know, my parents were really religious. I was homeschooled. I was pretty isolated. So I didn't really have a lot of resources anyway, you know, to ask or maybe talk about what was happening. My parents were not sympathetic. I mean, it's hard to even think about, but my dad would chase me around with an apple and He thought I was crazy and he would tell me I was crazy. And it was just, you know, it was really upsetting.

Adeel [4:21]: Yeah.

Elise [4:21]: I thought I was crazy. Yeah.

Adeel [4:24]: Wow. Okay. Yeah.

Elise [4:26]: So not positive. I mean, it could have been so much better or at least, you know, not negative, neutral. As in, yes, we know you have an issue and we don't know what it is, but it was flat out, you know, you're crazy. So that stuck with me for a really long time. I mean, I didn't really... get any understanding of this until maybe four or five years ago. So a few decades of, um, having kind of this secret thing that I didn't even know what to call it. Yeah.

Adeel [4:55]: So it started as, okay. Yeah. Um, food, food sounds, uh, at home with the family. Um, do you have siblings and stuff or?

Elise [5:03]: Yeah, I'm the oldest. I have two younger siblings. Neither one of them has any, has misophonia that I know of. And I've, I've talked to them about it, and my siblings are pretty understanding. Neither one of my parents is around anymore, so that's kind of, you know, there's no closure, but I'm okay with just not having that conversation with them anymore. I just don't think it would be productive. Yeah, and you know, movement bothered me from a really early age, too. I can remember being on a plane flight when I was probably in my early 20s, and this person across the aisle was jiggling their leg. And it took me until well after I discovered misophonia to even understand that there's that visual component too, you know, it's just so much more complex than I could have ever imagined.

Adeel [5:51]: Yeah. So you remember visual triggers from, from back then. Yeah. It seems like a lot of people are developed visual triggers kind of later on. Um, and maybe they just noticed it later on, but, uh, I don't know.

Elise [6:03]: Yeah. And I didn't make that connection between the two for a really long time. Um, And I mean, I don't know how you found out. For me, it was the Internet. You know, I would periodically go online and just search because I was so frustrated. And I went to audiologists. I talked to my general doctor. I talked to my shrink. And no one had any idea.

Adeel [6:26]: i think we all turned into like amateur detectives trying to figure this out and i don't even remember if was i i don't feel like i'm looking for i remember the article it was uh it was an article by um actually i think it was ctv which is actually a television network in canada i was here um yeah there was some crazy art interesting article about some dude in toronto who was uh you take a bag of carrots that his girlfriend was eating and throw it against the wall and hide in the bathroom. It's kind of interesting. But that's, yeah, I don't know if I was looking for that or someone sent it to me. But yeah, the internet, I think, is how a lot of us initially find out about her roughly five to ten years ago.

Elise [7:06]: Yeah, and I mean, I give Marsha Johnson a lot of credit. I was a part of that... it was like the four S I can't ever remember what the S's are.

Adeel [7:14]: Selective sound sensitivity syndrome. Yes.

Elise [7:17]: Thank you.

Adeel [7:17]: Yes. I remember I went on, I went online and tried to start a group, immediately found a group that would, then that's what it was called back then. Yeah.

Elise [7:26]: Yeah. So it seemed like it was kind of sniffing around the edges of what this was and it felt, I felt it was comforting just that, that people were talking about it. So yeah, I felt like we were edging closer and closer. And then a few years ago, the research really started coming out and that's, That's where I find the greatest comfort, really, is just support groups and then this ongoing research because that's really the only thing that's going to help us, I think.

Adeel [7:49]: Yeah, and the research is still pretty early. There's a lot of promising stuff happening, but it's still really just kind of understanding what's going on. And then treatment, we'll see. That might be years away. That's why I'm kind of like, yeah, I'd like to build as big of a community as possible because that's the most immediate form of therapy that we can have right now, I think.

Elise [8:10]: I think so. I don't honestly hold out a lot of hope for myself as far as a treatment. I mean, maybe, but I feel like it's more likely for the younger generation.

Adeel [8:19]: Exactly, yeah. I'm just going to cling to my headphones.

Elise [8:24]: Well, yeah, and I mean, at least they have tools that they can use. I mean, I didn't have headphones as a kid.

Adeel [8:32]: Yeah, and so when you were a kid... You didn't have to go to class and listen to everyone eating and munching and stuff. You had your own heart issues at home. Did you transition out of homeschool to a more public environment at some point, like in college, or maybe you went straight to a job? I'm wondering how that transition was to go into the real world.

Elise [9:01]: Yeah, that's a good question. I really didn't get into a classroom, a real classroom environment until... and being a good Baptist kid, I went off to Bible college, which was a huge shock in a lot of ways. I mean, I realized pretty early, you know, this is not for me. And also living in a room with three other people who were constantly snacking and making sounds, I mean, it was torture. And it had never occurred to me that all this agitation I experienced at home would go with me to college, but it did.

Adeel [9:36]: So you probably thought maybe this is just limited to my relationship with my parents or family or whatever.

Elise [9:42]: Kind of, yeah. And I think that's common, right? For a lot of people, we just notice it with our parents first because that's who we're around or whatever. Maybe the emotional attachment too, I don't know. But yeah, so taking that off to college was not great. I will say on the ladder of like competing priorities, my dislike for where I was kind of outweighed everything else. So yeah. it was manageable, but I didn't spend a lot of time in my room either. I've just found ways to be elsewhere, but it was confusing, you know, I mean, it didn't help this kind of internalized notion that I then had that I was crazy. And I, I don't like that word, but that's what we use. Yeah.

Adeel [10:23]: Yeah.

Elise [10:23]: Right. Um, I didn't really start seeing, I mean, I, I white knuckled it through college. I did a lot of traveling and I realized in retrospect, you know, it, It was easy to not be in one place for very long. I'm the queen of the Irish goodbye, if you know what that is. You know, just like disappearing at the end of something without saying goodbye because I just can't take it anymore.

Adeel [10:47]: Oh, the Irish goodbye. Yes. Gotcha. Yep.

Elise [10:48]: Yeah. Yep. And I mean, it all makes sense now, but it was, I think it was just pure, you know, survival instinct at the time.

Adeel [10:57]: Did it affect like grades or...

Elise [11:00]: I think, so Bible college was definitely a non-starter. And I mean, I knew that wasn't going to be where I ended up. It was just a way to get out of my home environment. I ended up going to University of Washington after I had lived overseas for a while. Again, you know, I didn't really know how to be in a classroom environment. So I was also still kind of learning. But I still remember trying to take a test with someone eating a bag of Cheetos in the row behind me. And just, I mean, I didn't, I don't even know if I passed. It wasn't one of my favorite classes, but it was just really hard to be in class. And in fact, I had to deal with a friend in one class where there was a lot of noises. We would take turns recording the class so I didn't have to go every time. And I would just listen later. It was easier.

Adeel [11:46]: Yeah. And did you know, you're meeting a lot of new people. Did you run into anybody who might have been displaying any symptoms that's similar to yours?

Elise [11:56]: No. This was top secret. My family didn't even know until, I would say, I don't know, 10 years ago. My nieces would always laugh at me. They thought I was in the CIA or something because I always was really... You would just disappear. I would disappear, but mostly because if we went out for lunch or something, I was really particular about what seat at the table I wanted to be at. You know, like back to the wall, no one behind me or beside me.

Adeel [12:24]: Mm-hmm.

Elise [12:25]: I mean, now we can laugh, but it was just so stressful at the time because I just didn't know why it was so important. I just knew that it was.

Adeel [12:33]: Gotcha. And so those were your coping mechanisms. You didn't really have, you weren't really using sound generation or music as a therapy or anything else. It was mainly like avoidance and controlling the environment.

Elise [12:50]: I think I did use music for sure without really understanding why.

Adeel [12:54]: And then

Elise [12:55]: I knew that white noise was really calming. I mean, I don't know about you, but I've had a noise machine for a long time just for like sleeping or, you know, like a fan. But I didn't really connect it. I don't know. Maybe I'm a little dense, but I did not connect all these dots for a really long time.

Adeel [13:11]: A lot of us, I think, just thought we were just extra annoyed. Yeah. And then, I mean, fans, people use, you know, the normals use fans as well to help them go to sleep, too. So it's hard to connect. It's not easy to connect dots because it seems like it's on a spectrum of something when it's really... The spectrum is a lot wider than we thought initially.

Elise [13:33]: I think so, too. I think my biggest frustration was I really did try to get medical help pretty early on.

Adeel [13:39]: Mm-hmm.

Elise [13:40]: And, I mean, I also have other things, you know, like wonderful panic attacks and anxiety. So I feel like maybe it's all part of a bigger picture, too, to some extent. But no one was ever able to help me. And, I mean, having a medical professional act like you really are just kind of crazy or perhaps exaggerating or making things up, it's just not helpful.

Adeel [14:04]: Yeah, I did have a, actually, well, I don't want to talk about it, but I did, yeah, I did have a physical a few days ago and I, I want to, I mentioned that, uh, you know, I have this funny, just cause I want it on the record, just, just as an awareness, if it ends up in some kind of, uh, medical search engine, um, somewhere around the world, I would like to have that word somewhere in my record. Um, so I think he put it down there, but it was just like, oh, so he's like, uh, who diagnosed you with that? And I was like, self-diagnosed. And just a few seconds of probably awkward, whatever. But I was like, you know, as long as it gets written in there and it appears in some kind of search engine for doctors and researchers, that's all I need. I don't really need to get into a big conversation.

Elise [14:48]: I think that's great. I think in a sense, we have to pave the way for whatever comes next, even if it doesn't get us anywhere.

Adeel [14:56]: Right, right.

Elise [14:58]: And I saw these audiologists in Oregon who, you know, they do the full workup, et cetera, et cetera. And they didn't really know what this was, but they were kind of on the right path of they wanted to give me the white noise generators, you know, the in-ear stuff. Yep. But at the time it was like, I can't remember, $3,000 a device or something. And I just, I didn't have the money.

Adeel [15:18]: Was that since you knew what misophonia was or were you trying to get an explanation for this before?

Elise [15:23]: It was right before. I just kind of was at the end of my rope and thought they were doing some kind of research. I don't even remember how I heard about them, but it was a teaching like hospital kind of thing. So yeah, I took time off of work and... traveled down there for a couple of days.

Adeel [15:45]: Was it Dr. Johnson or was it somebody else?

Elise [15:48]: No, it was through Ohio, let's see, OSHU, one of those two, like a speech and hearing kind of school. So they might be more aware now at the time they really weren't. So I think Marcia, I mean, for sure was way ahead of the curve as far as just paying attention to people who were mentioning this, whereas I don't think a lot of other people really did connect all of the kind of anecdotal stuff that they were carrying.

Adeel [16:18]: Yeah, it's still kind of that case where it's been a frustratingly slow awareness growing around the world. So I'm hoping stuff like this helps. And then, so you were in Portland that whole time. Well, I guess you've been in the Pacific Northwest a lot and you didn't meet anybody in college with it. You know, as you found out what Miss Phonia was, were you also starting to meet other people? I know there was a fledgling forum at the time for 4S, but yeah, curious when you started to kind of like find other people who had it.

Elise [16:54]: Yeah, you know, I was on that forum, but I was more of a lurker, you know, I never posted. And honestly, I didn't meet anybody until I went to the, I think the Vegas convention.

Adeel [17:05]: When was that?

Unknown Speaker [17:05]: 2017?

Elise [17:05]: Yeah. And it was a really last minute decision too. I almost didn't go. I was really kind of scared to meet other people. And I think I must have just seen something online and realized, you know, I could do this. It's a weekend and I wouldn't have to take time off work. I did not go to the Thursday evening reception because I was just too afraid of mingling. I'm not really sure what all the anxiety was about, but I did show up Friday and for the first, you know, morning session or whatever. And it was, it was just like meeting a bunch of family without all the emotional baggage, of course, but just, you know, people that got it and weren't, you know, I guess I had this sort of fear that we would all just be a bunch of weirdos together and I didn't want to be in a room of a bunch of weirdos. Um, and everybody was just so reassuringly just normal and human and great. That was my first experience. And that's what really motivated me to start, um, A video chat was I had met some really great people and didn't want to lose touch, you know, and wait another year to talk. So we've built our own little online community. I think you've, I think, been a part of one or two of those. But it's just so great. Every couple of weeks I just talk, you know, or laugh or let people get upset or whatever. I don't really know anybody in real life. I have one co-worker who... confided in me that they have it but that's it i don't know anybody else like in real life oh really so somebody somebody at your work did uh did did they know that you have it first and so they kind of opened up or they just yeah it was really strange i got laid off last year and so i had shared my resume with a couple of um more senior level people at my work and i don't want to out anybody so i'm not going to give too many details but they came to me afterward and they're getting close to retirement age. So this person's been around for quite a while and we worked together for over 10 years and I had no idea, but I always knew I liked going to meetings with this person because they never had food or, you know, never like like their pen or anything like that. And so they just kind of closed the office door and said, Hey, you know, I saw your resume and that you work, you know, very part time for the association. And I, I think I have this. Um, and it was a really cool conversation. Yeah. Yeah. Like they had no idea for most of their life. And now guess what? You know, it's a thing.

Adeel [19:30]: Well, we'll have to get them on the podcast for the other side of that story.

Elise [19:34]: Well, I'm just kidding. You know, they might be interested. I would approach them. They were really curious about the convention and kind of jealous that they, you know, wish that they could go. I just think they're not very open about it, you know, other than, you know, just please don't schedule me for a lunch meeting kind of thing.

Adeel [19:51]: Right, right, right.

Elise [19:52]: It's nice to have that solidarity. We can kind of, connect over that I just wish I would have known you know

Adeel [19:59]: Yep. Yep. Interesting. Yeah. Yeah. I mean, I had a similar, my first convention was a year, I think it was a year after Vegas. So it was Minnesota, which is where I live. So it was easy for me to get to. Right. Yeah. Similar thing. You walk in, I mean, I walk in and the food is like, you know, hard boiled eggs, soft muffins. I'm like, yeah, this is awesome. And then there are a bunch of, yeah, I mean, you know, awkward, weird people, but a lot of, non-awkward people but whatever whoever whoever is whoever was there it was just uh like a family like a reunion almost where you didn't really have to like catch up with anybody because you just knew what life is like in in in many ways at least psychologically and what really kind of i mean what really kind of blew me away in vegas especially was i mean here are people at all parts of their like professional careers parents i mean whatever um and everyone just like

Elise [20:56]: really strong and like hoping you know i mean i don't want to say across the board but most people are doing pretty much okay yeah and i just think that's kind of amazing to me i mean we could all be at home just like with four fans turned on not leaving the house but we're not yeah that's pretty cool

Adeel [21:15]: Yeah, but they could also be kind of selective of people who are, you know, have the kind of productive enough or have the courage to kind of go out and meet people are probably the ones who might be bottling up, but also able to cope.

Elise [21:28]: Yeah.

Adeel [21:29]: There are probably a lot of people who just, you know, just never leave the house at all and are probably suffering a lot more in some remote parts of the world.

Elise [21:39]: I actually, now that you say that, I 100% agree. And, um, That's, I guess, where my concern is. Sure, there are those of us who can cope or have to go to work or whatever, but I do know of folks that really struggle, and that's the scary part of this. It does feel like a tightrope sometimes.

Adeel [22:04]: Going back to what you said about kids, I'm glad that one of my main concerns is always a lot of these people are you know probably like super smart like Lyle and suffering in school and kind of like losing and missing out on a lot of their potential and I'm hoping that all the uh that's why I'm so glad there was another there's a separate track for parents and families and kids to kind of like uh help them cope and kind of um reach whatever potential they have because that'd be so sad if uh kids are just kind of like you know missing out on on success in life because of this

Elise [22:37]: It's a good point. You know, I think back and it took me, it took me seven and a half years to get through college. I mean, some of it was, I was really broke, but some of it was, I just didn't want to be in that environment, you know, and maybe that was like a subliminal kind of, it's, you know, not, not the most greatest place for someone with misophonia. Um, I mean, and not to mention the work environment. I mean, I don't know how you cope. We talked about that a little bit at the, at the conference, but you know, every day is a new challenge.

Adeel [23:06]: Yeah, so what kind of work do you do? Even more importantly, what kind of office environment are you in?

Elise [23:14]: It's mostly an open office, but I did manage to get myself a very small office with a door that closed.

Adeel [23:21]: Did you ask for that?

Elise [23:23]: I did.

Adeel [23:23]: Yeah.

Elise [23:24]: I did, but I spent a lot of years in cubicle land, probably more than I've had in an office. And I do project management, so it's a lot of meetings, but it's also a lot of just heads-down desk time, so it can be done anywhere. And I'm lucky enough to work in higher ed, so I was able to get an accommodation over the summer. I was just realizing that being in my open office environment was causing a lot of stress. You know, just... It's impossible to go meet with a colleague who's munching on chips all day or an apple. And so I worked with my HR department, and they approved me to telework every other day, and that's been life-changing.

Adeel [24:09]: Wow, every other day. That's pretty good. Yeah, yeah, okay.

Elise [24:11]: Great, yeah.

Adeel [24:13]: And did you mention misophonia, or was it just... I did. Yeah, okay. I did. How was their initial reaction? What was their initial reaction?

Elise [24:20]: They have no idea what it was. It was actually a really stressful experience. I mean, I won't undersell it. Yeah. But I felt kind of like what you mentioned with going to your, you know, getting a physical. I want it on the record because I don't want it to be a surprise for the next person and the next person. So, yeah, I got a letter from my audiologist, who's great. She does know about misophonia, and she fitted me with the, you know, the white noise devices. She wrote a great letter, and so I just filled out the paperwork, talked to a bunch of HR people, and just explained what it is and what I wanted. I'm allowed to telework every other day, and I am not required to go to meetings where the main event is like lunch or food or whatever.

Adeel [25:04]: Yeah.

Elise [25:06]: So I've already missed one, but this is the thing, right? I missed one all-hands meeting because it was held over lunch with food, and so I didn't get to go. So I feel like that does have an implication as far as networking or just being present and visible.

Adeel [25:22]: It's a step, though. I mean, this is a big step.

Elise [25:27]: But I also didn't have the future trip for two weeks about a lunch meeting I was going to have to sit through. So that was pretty awesome. Yeah.

Adeel [25:34]: Yeah, that's great. That's one thing. Another initiative I'd like to see happen more, I'm probably sounding like a broken record now, just how HR could be kind of a... secret weapon in spreading awareness and also changing the work environment for people who are working down to five in an office.

Elise [25:52]: Well, I think we kind of hesitate as a community, but in the U.S., we have the Americans with Disabilities Act. I know Canada has a lot of protections, too. It may not be every country, but we really can take advantage of the protections in these sorts of legal... whatever provisions and we had that wonderful attorney at the convention in Denver talking about it and you know those provisions are there for a reason so I fully support anyone who wants to exercise them and I know you know Marsha writes a lot of accommodation letters for students we just have to we just have to ask

Adeel [26:37]: Yeah, I would have to ask and also I think advocate that. Also come at it with an angle of, you know, unemployment is low. It's hard to find good candidates. If you're the kind of company that's serving food all the time and not paying attention to this, you might be losing out on talent. It's going to hit your bottom line. That might be an angle which we want to, especially in the industry I'm in, in tech, it's hard to get talented engineers. And as Marcia said, 30% of her clients are engineers. So that could start to have a real material impact. I don't know, just another way to nudge the equator society.

Elise [27:22]: Well, yeah. And do you feel like you have enough flexibility at work to accommodate what you need?

Adeel [27:27]: I work from home now, so I kind of... Oh, that's right.

Elise [27:32]: Okay. So you just have to negotiate with your family.

Adeel [27:35]: Yeah. Yeah, exactly. And, uh, I'm pretty much the only one. Yeah. Most of the time I'm the only one home and I'm have my little office, uh, on, you know, in my, in the attic. And so, uh, it's far enough away from the street too. And, um, yeah, that's, it works for me.

Elise [27:53]: But I don't mean to turn the tables here and interview you, but I do, I do have a question. So when I was requesting this accommodation, my audiologist said, well, I'm just worried you're going to isolate yourself more. Um, And that comment really took me by surprise when I thought about it. And I mean, I'm isolating myself anyway. You know, I just hide in my office at work if I don't feel like interacting with someone who's having their big bowl of carrots. But do you find that the more you like telework and retreat to the attic, like the less you want to come out? Or does it more prepare you for the times that you do want to interact?

Adeel [28:31]: Yeah, for me personally, it's more of the latter. I know for a lot of people, especially in winter states like mine, it can really be depressing. But no, for me, I have a pretty good sense of when I need to go. I can go out, run an errand, go for a walk, go to the gym, whatever. in the middle of the day. So that doesn't affect me too much. And I communicate with a small team over Slack. We do video calls when we need to. And so that's all fine. I wouldn't necessarily recommend this for other engineers who are coming right out of college and just being siloed for their entire career. I mean, I've... Right. For like, whatever, 20 years, I've worked in every size company and in every possible environment, office, you know, closed our office to like a large open office, small open office, condos, basements. So like, Um, I've worked in kind of every, any environment. So I kind of like, you know, this is just another, this is just another thing that I now prefer, but I, you know, I don't, I don't mind social interaction. Um, but I also definitely don't mind, have no problem working on my own because I just know how to, I know when I need to interact with other people and it just works.

Elise [29:46]: Yeah.

Adeel [29:47]: If you're totally silent from the beginning, then yeah, there's a lot of things you won't really know when it's time to go and maybe collaborate with somebody or ask for help or get them to maybe pair program with you or just work something out on a whiteboard. I think with that experience, I have better sense. So working from home works well for me.

Elise [30:08]: Yeah, that's interesting. So you almost need the, I don't want to say the white knuckle experience, but you do need to be in that work environment so you later can know, okay, this is what I need or this is what I need be present or visible or whatever.

Adeel [30:24]: Yeah. Yeah. It definitely helps to have all different perspectives in your background before you just close the door in the attic, you know, because then if I started that at like age, whatever, 22, 23, I would be a different person now. I mean, yeah, I might, I might be, uh, I might've had less triggers, but, uh, career wise, I don't think it would have been very good. So, um, now that I'm an old man, um,

Elise [30:53]: With the holidays looming.

Adeel [30:55]: Yeah, that was actually going to be my next question.

Elise [30:57]: Is that your next one? I was wondering.

Adeel [30:59]: I mean, it's not, I don't have, yeah, you know, I don't really have like, you know, going back to this question, I kind of go all over the place. But yeah, we, you know, we happen to be recording. I don't know. So I don't know when this is going to go live. We have so many, so many amazing conversations and people. That's great. done interviews we'll do it for thanksgiving 2020 yeah yeah or easter or whatever i mean there's always a holiday coming up so um for the for the holiday that is this week uh you know i'm hosting but um but you know i have we have plenty of rooms with doors and um but that's not a problem also lucky to have oh i'm also you know that my uh the folks who are coming over um you know we get to choose who comes over so uh and you know we like everybody obviously everyone so it's um so it's good i have a lot of escape rooms and uh and it's it's gonna be good company uh and if you know i ever need to get out of the house um i'm fortunate to know a lot of almost every neighbor on the block so you know it's easy to just kind of go and have a, you know, beverage or something with somebody and then come back. So it's, it's, it's, uh, it is something that we all consider. Um, and so how, how about you, how about you, what's going on? Uh, what are your plans?

Elise [32:15]: You know, it's, it's, I don't host, I live in a studio apartment. So, you know, having one person over is really stressful. I can't even imagine like my whole family, but, um, uh, yeah, I'll go to, I'll go to my family. My sister lives South of town. And so she always hosts a big, dinner and it's really fun. The only thing I stress out about is the sit down dinner part of it.

Adeel [32:37]: Yeah.

Elise [32:37]: You know, because it's pretty tight quarters and it's pretty obvious if you have to get up. And I mean, last year in my video chat, we talked about this a lot. And someone had mentioned, you know, it could be really positive to just say to your host, hey, I might need to just step out for a minute. And everything's fine. The conversation doesn't need to stop. I'll come back. I might just need to gather myself for a second. And so I let my sister know that. And I ended up being fine. It's just, you know, there's a lot of baby carrots and that kind of thing at the snack table. So I do kind of practice my CIA seating, as I mentioned earlier. I'm just very strategic. But I also make the place card, so I do kind of take control of that whole feeding situation.

Adeel [33:34]: Yeah, we didn't have a lot of, you know, these kinds of, you know, growing up in a Muslim family, we didn't have a lot of these kinds of holidays where, like, tons of people had to sit down and eat for holidays. So that was kind of relatively new for me. But, yeah, I mean, that's great. I just mentioned some. I mean, if you're going to be invited somewhere, you're going to be hosting, you're probably going to be around people who will understand if you need to step out. And then the other thing is, you know, I just try to eat as fast as I can and maybe help out in the kitchen or something. Or there's always something that has to be done, cleaned or whatever.

Elise [34:10]: Yeah. I'm finding that most of us are the people volunteering to help clean up or take the compost out or walk the dog or whatever.

Adeel [34:18]: Oh, that's a good one. Take the compost out. Yes.

Elise [34:21]: Oh, totally.

Adeel [34:22]: Maybe have a strategic spill somewhere that we can kind of like mop up later. Yeah, exactly.

Elise [34:29]: Or refresh everyone's drinks. I mean, they think we're great hosts, but mostly we're just trying to stay mobile. It might be a thing. I mean, I think it would be interesting if there were maybe broader research. So, you know, there's the brain stuff, but it would be very interesting to know kind of what fields people tend to go in. And I mean, I know we've all talked informally and it kind of runs the gamut. But I mean, your job sounds like kind of the dream environment, honestly.

Adeel [34:55]: It took many years to get to this place. But yeah, I mean, in San Francisco, I was in like a 600 square foot townhouse. But luckily, you know, it was just my wife and I and child. It's totally fine. Going back to college and having roommates, that's another reason why I'm kind of happy that the kids are having the resources that they have because college can be a free-for-all, not just in class, but who you get as roommates who are on your floor.

Elise [35:31]: Yeah, that's true.

Adeel [35:33]: Cafeterias are almost like a daily Thanksgiving.

Elise [35:39]: It's true. Although, I have to say, I work in higher ed and the options students have now is are actually pretty wonderful. I mean, it would have been great to have this when I was in college, but you know, I'm happy for the students now. Although, you know, being in close proximity with people, you do learn things too. So I feel like it kind of cuts both ways if you can, if you have the tools to be able to handle it, you know.

Adeel [36:06]: What kind of stuff are you seeing in higher ed that, are they accommodations or just quieter rooms or technology?

Elise [36:18]: Accommodations, yeah, accommodations. I do know in some of the classrooms there's enough technology that you could plug into the audio if you needed to, which would have been great, you know, to kind of not listen to all the commotion around you. And just the dining options, you know, it's not like there's one dining hall. I mean, I'm at a fairly large university, but they have so many options. There's, you know, little cafes on campus or like the big kind of dining hall areas. So you can go wherever. But that said, you know, it doesn't necessarily build a real strong sense of community that you would get if everybody's kind of in the same place. But maybe the least of their worries, I don't know. They're pretty stressed out. Gotcha. And also just think about like how common it is to see anyone walking around with the big headphones on or AirPods or whatever. I mean, it's no big deal.

Adeel [37:15]: Yep. So now that, I mean, you're, you know, you're at, you were kind of at least for a while active in the association, you know, but you've met some coworkers. Do you talk to, how do you talk to friends about this? Or people like close people in your life, relationships, whatnot?

Elise [37:31]: That's probably my big gap. I mean, my significant other for sure knows about it and is very protective, which is great. I wouldn't say most of my friends are very aware. I mean, I've mentioned it. They just don't have much of an understanding. Yeah.

Adeel [37:48]: I don't know how you are.

Elise [37:52]: I just really don't want to make a big deal about it. I just kind of just don't. I also feel like It's not something I would mention casually because I don't want anyone to use it as ammunition. I've had that happen. You know, someone eats a carrot and says, oh, is this the kind of thing that bothers you? And, you know, I have to restrain myself. I don't know. I feel like I still experience a fair amount of shame, for lack of a better word. Or just I just don't want to talk about it. I mean, it consumes... A lot of my waking thoughts anyway. Yep. So a few friends are in the know. I wouldn't say most of them know much about it. I would say on social media, I'm really quiet about it, and I don't know why, but I just don't know.

Adeel [38:47]: Yeah, that's interesting. I mean, like you said, it takes so much of our waking time. We're so happy to, I know, we'll spend all this money to go to conventions and we're so happy to talk to everybody about it. But yeah, just not, I think with all of us, it's that years of guilt and shame in which we don't really want to, we want to, yeah, we don't want, we're not ready to kind of like take it totally mainstream yet.

Elise [39:18]: No, and I honestly, I don't know, Dale. I haven't figured out a really, I don't have my elevator speech ready. Your pitch. Yeah, the pitch. It just feels like it takes a really long time to explain. And, like, I always have that moment where I see the look on someone's face and they're like, either they're like, oh, yeah, things bother me too, or I have no idea what you're talking about. And at that point I just kind of give up, preemptively give up.

Adeel [39:44]: Yeah, I mean, the whole idea of it exhausts us anyways. I mean, the experience with it. So, yeah, we just don't want to write. I don't know.

Elise [39:55]: You know what I mean. Yeah, I am a short story writer, and I do have thoughts of I want to incorporate this somehow into fiction, but it needs to be more organic. You know, I'm not going to just write, like, the misophonia story. So I do have hopes of incorporating it in a more creative fashion. I just haven't figured out how. I don't know. The way I write is fairly organic anyway. I don't generally go in with a mission, so I think it'll happen. I also think it's kind of too close to me in some ways, you know, and it's harder to write about things that you feel kind of emotionally attached to, so I don't know. I'm still working on it.

Adeel [40:35]: No, yeah.

Elise [40:36]: It's a life goal.

Adeel [40:38]: It's organic, yeah. Yeah. Interesting. Well, yeah, this might be a good spot to start wrapping up. Is there... Well, first of all, as we know, there's tons of people. We know a lot of people who are relatively open about it. There's a lot of people who have no plans to share with anybody. Do you have any kind of, I don't know, anything you want to, any advice or anything you want to tell people who are living with a lot of, there could be a lot of people homeschooled right now who are, you know, suffering at home. Any kind of tips for them?

Elise [41:17]: Yeah, I think about that a lot, actually. I mean, the two things that I think, resonated the most with me when I was really starting to explore and learn as, you know, do find community wherever you can. And we're really lucky that we can do it online. I mean, Reddit has a great couple of great subreddits or threads about misophonia. You can lurk all you want, but it's helpful. And then just finding some way to be authentic with it has been helpful for me. Even just being open with one good friend or going to the convention and meeting some people, it's liberating. Yeah, that's a great point. Yeah, there's no pass. We all just have to figure out what's going to be a good, kind of healthy next step for all of us.

Adeel [42:14]: Cool. Well, Elise, thanks. This is great. It's good to finally talk to you again since the convention, and cool.

Elise [42:23]: And thank you so much. This was great. I really appreciate you organizing this, and what a great way to start the week. Thanks a lot.

Adeel [42:31]: Thank you, as always, for listening. Please follow us on Instagram or Facebook at Missiphonia Podcast, and you know we're also on Twitter at Missiphonia Show. Leave a rating or review on iTunes and it will help more people discover the podcast. Theme music is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [43:13]: you