Tim J. - Connecting Misophonia and LGBTQ Experiences
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 2, Episode 9. My name's Adeel Ahmad, and I have misophonia. Today, I'm talking with Tim. Tim works as an LGBTQ advocate professionally, and we talk about many of the common experiences as someone with misophonia, but also some interesting similarities in the life experiences of being an LGBTQ person and being a misophone. Both are very personal experiences that are often difficult to understand and talk about. Also, I want to say happy Pride Month to everyone out there. Last week I mentioned a project I was going to start called The Miso List, and I'm happy to say it's live at misolist.com, M-I-S-O-L-I-S-T. This is a new curated directory of businesses and products made by people with misophonia. I want to support each other by spending money on the things we do for work. And I hope this becomes a growing list. It's totally based on submissions. So please click the add button at the top right and fill out the Google form. It comes to me and I'll try to get it up ASAP. Each week I plan to do a quick free plug of something from the list. And this week I want to mention Rockerbox Spice Company. Rockerbox is a small, solo, female, misophone-operated spice company specializing in single-ingredient garlic and onion powders, pickled garlics, and black garlic. Use coupon code MISO at checkout for 10% off. Go to rockerboxgarlic.com or find the link at misolist. Now, let's start my conversation with Tim. Tim, welcome to the podcast. It's great to have you here.
J [1:46]: Thank you so much for having me on and thanks for doing the podcast.
Adeel [1:49]: No, of course. It's always my pleasure. So as a listener, I'm sure you know that I like to just kind of find out where people are located.
J [1:59]: Yeah, so I'm originally from Chicago, but currently I live in central Pennsylvania, in a pretty rural part of Pennsylvania.
Adeel [2:07]: And was that a choice of living based on Misophonia at all?
J [2:13]: No, it wasn't. We had been living in major cities, but we're here because of my partner's work. So it's a bit of an adjustment to be living in a rural place after having lived in some bigger cities, but it's been a good adjustment.
Adeel [2:25]: Yeah. So maybe do you want to talk about, I guess, you know, might as well hit rewind and head back to early days for you. How, when did you kind of, what were your kind of your first rough memories of this condition?
J [2:40]: Yeah, you know, I've been listening to a lot of your other interviews and I'm pretty textbook in terms of what seems to be common for folks. So, you know, I don't remember being bothered by it when I was real little. And in fact, I remember thinking it was kind of funny to, you know, chew with my mouth open and stuff like that. You were part of the problem. I know I was for a while, but I mean like three, four years old, real little. And then it was, Right around puberty that I remember starting to experience the significant discomfort. And then when I really knew it was a problem was in high school. And that's when I started to really kind of figure out what the contours of my triggers were and started adjusting my behavior accordingly.
Adeel [3:23]: Yeah, like you said, that sounds pretty textbook. And were your initial triggers basically family members at home and kind of eating around the table?
J [3:31]: Yeah, and my father in particular is the first person who I really remember getting under my skin.
Adeel [3:38]: And what kind of reactions did you have? Like the cringing and the covering your ears kind of thing?
J [3:47]: Yeah, back then I don't remember... covering my ears as much as, you know, the death stare, um, was a big one and asking him to eat more quietly, sitting on the opposite side of the table from him. A lot of the typical kind of avoidance behaviors.
Adeel [4:04]: And what was, uh, did your parents notice? I'm sure they must've noticed what, uh, how did they react?
J [4:10]: Yeah, they did. And I, I'm pretty sure my mother also has misophonia and maybe even other family members. So, um, there was an understanding that chewing loudly was not acceptable, but it was always kind of talked about in terms of just general good manners. And I don't really think we acknowledged that for some number of us, there was a much different kind of more intense reaction going on.
Adeel [4:36]: And how did you hear other family members had it? Were they, did they have other triggers apart from, apart from the eating or they just very intensely talked about that and those kinds of things?
J [4:47]: was mostly that and that's when we kind of realized that we had the shared experience um you know other members of my family are just sensitive to noise in general very light sleepers didn't like having the tv on very loud so there was kind of an understanding that there were general sound sensitivities in the house but it was mostly around the kind of mealtime sounds that we saw it happen the most significantly
Adeel [5:12]: Right. So then, so yeah, so you're getting triggered by a father, family members. And then in high school, what happened around then? It was that folks at school were starting to trigger you and it started to blossom around them?
J [5:25]: Yeah, I think so. From what I can remember, you know, that's when things that hadn't bothered me previously started to really be noticeable. So gum chewing, clicking, all the kind of sounds that people typically don't like. And You know, I was trying to think back in preparation for this interview if it was particularly tied to stress, but I think for me it's just been a gradual intensification over the years.
Adeel [5:51]: Yeah. Intensification in terms of the reactions to the same sounds or more sounds starting to trigger you or a combination of both?
J [6:00]: Yeah, a combination of both for sure. I think I've begun to experience the creep where something that didn't bother me before starts to gradually be less and less tolerable.
Adeel [6:11]: Yeah. And does that happen organically or is it like you read about a sound maybe or hear about a sound and then suddenly it starts to add to the list?
J [6:21]: For me, it's organic. Um, you know, hearing about what bothers other people doesn't then make it bother me. I think it's more about what I'm exposed to and the frequency of that exposure.
Adeel [6:32]: And I'm guessing, uh, visual triggers are part of your life too now.
J [6:36]: Um, that's something that I, it's not as intense as when I hear the sound. I think for me, a visual trigger is just a warning that a sound is on the way. Yeah. Um, it's not, it's not seeing it itself, but rather, um, that I might need to make a hasty exit from the room or get my headphones, that kind of thing.
Adeel [6:55]: For sure. And did it start to affect your grades at school when you were in high school, do you think?
J [7:03]: I don't think it did. I think it wasn't severe enough at that point that I was too bothered by it. I remember at my school, too, they were pretty strict about no food in the classroom, that kind of thing.
Adeel [7:15]: Okay, we need to know that school so we can send all our kids there. Oh, that's cool. And what about socially? Was it starting to affect things socially or were you starting to keep a list in your head of people at school who you need to stay away from, maybe teachers?
J [7:33]: yeah i mean i think we've all probably had this experience but you meet someone and you think they're super cool then you sit down to eat a meal with them and halfway through you think well it's too bad we're never going to be you know i think for me socially i definitely can tell you exactly how every single person in my life eats and talks and if they do trigger me i kind of have that rolodex in my mind And for me, it's just a lot of kind of having to navigate my desire to be social and to be with people, which I really love with, you know, needing enough time alone to kind of get my energy reserves back up and recuperate a little bit.
Adeel [8:13]: Yeah, absolutely. Okay. And so all this time, you didn't know what MISO was in terms of whether it had a name or not, right? Up to this point through high school?
J [8:27]: Yeah, the first time that I remember understanding what it was was when that New York Times article came out.
Adeel [8:34]: Yeah, it's a famous one. Yeah.
J [8:37]: And I remember reading it and thinking, Eureka, this is it. This is absolutely me. And it was such a, you know, on the one hand, it was kind of depressing because the article said, you know, there's no cure and not many people are researching it. But on the other hand, it was tremendously validating, which was a relief in a lot of ways.
Adeel [8:57]: Right. And did you start to send that link to people, tell people about it, print it out, pass it to the town? Or was it more kind of a quiet relief and doing more research?
J [9:11]: More the latter. I gave it to some people who I also think have misophonia.
Adeel [9:17]: Like the family members?
J [9:20]: Yeah, exactly. And at that point, I was with my partner who I'm with now. So it was helpful to show him and say, you know, this describes what I'm experiencing. And, um, he believed me and took it seriously beforehand, but I think it's always nice to have external corroboration of what someone in your life is experiencing.
Adeel [9:40]: Yeah. And so he was, uh, it's obviously he knew, cause this has been a big part of your life that, uh, these things, it sounds rebutting. Was he kind of accommodating beforehand as well?
J [9:50]: Yeah. He's, he's been really good about it.
Adeel [9:52]: Um, did you tell him like right away when you, when you met him or, um,
J [9:57]: It was interesting. You know, at first, I think, you know, the excitement of a new relationship kind of blunted my reaction to some of the sounds. So it was kind of easier to tolerate. But, you know, I think you have to live with them. It's what I was just going to say. You know, I know a lot of people talk about it's the folks closest to them that trigger them the most. And for me, I think that in part is because there's kind of this sense of like. well, I've committed to you for life, so now I've got to live with this forever. Right. So when the relationship became more serious, that's when I thought, I want this to be sustainable, so I have to be forthright about some of the accommodations that I need from him.
Adeel [10:39]: And he was pretty supportive at that point. Yeah. And then, and then, yeah, after sharing the, again, I'm curious, what was your reaction of people after you, so he, you know, it was externally validating when you showed him, well, what about your family members? Did they start to take their own misophonia more seriously or was it just kind of like, eh?
J [11:00]: Yeah, I think they did. Because for them as well, it kind of helped make sense of what they were experiencing. And for the family members who don't have misophonia, I think it was helpful to to understand that it's not that we were picking on them or that they were bad or doing something wrong. It helped to remove some of the kind of value judgments that get involved when you're asking people to change habits. So I think it was good as a way to kind of depressurize some of those interactions and get to the heart of the issue, which is really as simple as just like trigger, response, trigger, response.
Adeel [11:37]: How were you coping? Actually, maybe before you knew what it was, was it mainly talking to people, having them try to reduce their triggers, or leaving the room? Or did you start to build up an arsenal of tools, like the obvious ones, headphones and whatnot?
J [11:53]: I think for me, I tend to take the responsibility onto my own shoulders rather than put it onto other people. So a lot of my coping mechanisms are avoidance and things like headphones. I get very shy about being forthright about my misophonia.
Adeel [12:12]: Yeah, most of us do.
J [12:14]: I know. I have a fear of people reacting badly or feeling as though they now have to make all these kind of inconvenient concessions for me. I recognize that's not a strictly rational response, but it definitely is a hesitation that I have.
Adeel [12:31]: Yeah. Did you ever have any particular negative response?
J [12:36]: Not that I can think of. Usually the most negativity you get is somebody just kind of being like, okay, whatever, and then not really changing their behavior. Right, right, right.
Adeel [12:46]: Did you ever talk to a professional at any point, like an audiologist or a psychologist?
J [12:52]: No, I've never spoken with an audiologist. I've been in... psychotherapy, just general counseling for many years, and it's often something I talk about in that context, but I've never tried to describe it to a medical professional outside of social workers.
Adeel [13:12]: Yeah, and what do therapists say? I've heard some people who have no idea, and some people who have. Curious what your experience was.
J [13:21]: Yeah, it's been interesting. Some of them, I've had... three kind of main therapists over the years that whenever I moved, I would then find a new person to work with. And they've all taken it seriously, but some of them have heard of it before. Others, you can tell the next session Googled it to see what's going on there. I worked with one person who actually got really interested in the topic and told me that they had a couple other patients who were also struggling with it. So that was interesting to know that, you know, this person wasn't a specialist in this topic, but had just kind of organically ended up with a caseload of several of us with misophonia.
Adeel [14:03]: Oh, interesting. Okay.
J [14:05]: Yeah.
Adeel [14:06]: Yeah. Um, yeah, I mean, since that article and other articles since then, I guess there has been, there has been more awareness. Um, and, uh, and what do you do? Uh, do you, uh, are you working right now? I'm curious, uh, like, um, how, how it is in kind of your day to day.
J [14:23]: Yeah, so I am working now, and I've been a remote worker for the past four years. So it's not too much of a change with the pandemic. My role is that I'm an advocate for LGBT folks. Specifically, I work with various health care providers to make sure that they are providing sensitive care. So now my day is Zoom calls all day long. Before this, I used to travel quite a bit. I would be on the road maybe. 10 days a month, visiting with different clients and doing a lot of public speaking and engagement. So being grounded has been a big change.
Adeel [15:03]: Yeah, right. Yeah, for a lot of us. I too have been working from home for actually around about that time as well. And do you find it harder or easier to be at home? Are you like triggered more or less?
J [15:17]: It's been better than I thought it was going to be. When I first heard we were going into quarantine, I thought, like, oh, brother, this is it. I'm cooked. Right, right, right. But it's been okay. I think for me, what's been the most difficult is not really having any time strictly by myself. Yeah. You know, and I want to say I feel very privileged to be in lockdown with my partner and to not be totally alone. Right, right. You know, the occasional trip where I was in my own hotel room with no noises or where he was traveling occasionally, those were kind of welcome reprieves. So that part of it has been difficult.
Adeel [15:53]: And in your work, when you were traveling, did you start to meet other misophones? You know, in kind of the work that you do, not obviously directly related.
J [16:08]: Yeah, I've run into a couple of people who it's kind of come out in conversation and they've said that they also have misophonia. What's much more common is that, you know, I'll be sitting at an airport lounge and somebody will make a noise and I and another person will both do the death stare and then catch each other's eye. Yeah. Kind of get that knowing look of like, oh, you too.
Adeel [16:30]: Right. Muttering nice words in your breath.
J [16:34]: Yeah, exactly. Yeah.
Adeel [16:37]: Has this been your occupation for a while? Have you had other kind of office environments that you've worked at as well?
J [16:44]: This has been my job for coming up on seven years now. And before that, I was in higher education and grad school, both as a student, but also as a teacher. So that environment was pretty good because I was leading the class. So I could just say, you know, no candy. You're expelled if you make a sound. Yeah, exactly. It's the fastest way to fail my class is to do something like that. I'm joking. I wouldn't fail a student for that. But for me, the situations that have always been hardest are when there's a sound, but there's no way to get away from it. So when I've been in shared office spaces, if somebody is eating their lunch, but I'm on a conference call, so I can't really be blocking the sound. because I have to be attentive to what's being said on the phone. That kind of situation has always been a difficult one.
Adeel [17:35]: Yeah, I mean, yeah, the Zoom calls are always tricky. As somebody once said, like in an office environment, it is easier to just kind of go outside or find a room. But in a Zoom call, it's like everyone's microphone is right in your ear. So it's like, you know, if somebody's eating, it's, you know, it's right next to you.
J [17:52]: Yeah. I don't know if this has been your experience, but some number of our team have been remote workers for many years. And we kind of have a very professional online culture. But I've noticed that for folks who had to transition really quickly to working from home, they kind of immediately were like in their pajamas doing whatever they wanted all the time on Zoom calls. So like, whereas in the office, they probably wouldn't be. having their lunch during this meeting, now they feel like they can because the work home boundary has become so blurred.
Adeel [18:24]: Yeah, I mean, my work Zoom meetings are OK. I've had other, let's just say, board meetings where, yeah, I've had to tell somebody in one month to not eat cereal during the call. And even mention that, you know, I have a freaking podcast about this as well. And then what happens next month, there's three people eating on the call. I have to like, I have to like minimize the screen and kind of like move it, you know, find, find that place on the, find that place on the, on the, on my monitor where I can kind of still have access to the mute button. But yeah, just get the visual triggers out of my, anyways, I don't want to think about that. It's still such an emerging condition this is that it's just hard to explain. These days, especially with everything going on, I don't have the energy to explain another thing to people.
J [19:23]: Yeah. And with all of our socializing now being online too, it would be much more tolerable to get together with a group in a noisy restaurant. That's fine. that same group now wants to meet and all share a meal over zoom. And it's like, Oh no, I, I will join you after dessert to hang out with you.
Adeel [19:43]: right yeah exactly um yeah i try to eat as quickly as i can usually wherever i am um of course if i eat too quickly then i'm just sitting there listening yeah so uh yeah whenever i was i mean whenever i wasn't working um from home i just never liked to kind of have lunch with my co-workers i don't know what it was but uh with friends it's different
J [20:06]: Yeah, with friends, I've found that I really like, and I think this is also my personality, but I always prefer to host because then, one, I just like creating community for people, but two, it means that I can always be jumping up and down to check on this thing or get someone a fork and kind of just be a busybody while everybody's eating and then not have to have that feeling of just being stuck, sitting there, unable to kind of get away from what's going on.
Adeel [20:35]: Absolutely. I use that trick as well. Dishes need to be washed or I need to get something else in the kitchen. What about for holidays, for family holidays? Do you tend to host or do you have certain protocols that you follow?
J [20:53]: For holidays, we tend to travel because a lot of our extended family live in different cities and there are more of them in those cities. So it makes more sense for us to go to them. Um, holidays can be rough, you know, when it's a really big group, you know, if it's the whole family and friends, that's okay. But holidays and vacations tend to involve a lot of unstructured time and unstructured time in combination with a lot of available snack foods is a pretty bad combination for me. So I find myself trying to do things like, um, you know, get a temporary gym pass when we're in town so I can go out to the gym and get some exercise or reading a book outside on my own, just things to give the day a little bit more structure so that I know I have that escape route should I need it.
Adeel [21:44]: So you're mentioning that obviously you do work with LGBT. When you first reached out to me, you said you wanted to talk about kind of like the intersection of LGBT and me. So are there some trends that you're seeing?
J [22:01]: Yeah, you know, when I first had that thought, I was thinking of it mostly in terms of my own experience and i don't know if other people have talked about this but you know to me they're both things that as a younger person i felt really intensely but didn't have a language to talk about or kind of make sense of so they were you know both experiences that were confusing and then there's that moment of like aha here's the word that describes what i'm talking about and then similarly there's you know kind of that fear of what disclosure
Unknown Speaker [22:34]: means.
J [22:34]: So, you know, when you're coming out, it's really a very similar experience where, you know, when you come out as LGBT, you worry about being accepted, if it'll change people's perceptions of you, if it'll change how they act around you. And obviously the calculation with misophonia is really different, but you know, there's, there's a lot of parallels in the two experiences of having something that is intensely felt but confusing and also often difficult to get other people to understand if they haven't had that experience themselves.
Adeel [23:07]: Yeah, absolutely. And yeah, I mean, kind of coincidence probably that this also starts around that kind of confusing puberty time. And so, yeah, it's, yeah, like you said, and it's, you know, it's difficult conversations with your parents, if you even have them, if you even find out what it is. Yeah, that's really interesting. So did kind of one experience kind of help inform the other maybe as to kind of how to react or kind of like help get you through?
J [23:42]: Yeah, I mean, that's why I still am kind of a little bit confused as to why I struggle in terms of talking about my misophonia really publicly because, you know, in many senses at this point, I'm like a professional gay person. I walk into a room and it's like my whole job is being an advocate for the community and that same spirit of advocacy is true for me kind of internally around misophonia, but I still kind of hesitant to be like really public about it. And I think my experience of having the people around me come to accept my identity as a gay man and be supportive, I think that will inform then conversations when I talk more widely about misophonia, but there's definitely, um, more hesitation about coming out as it relates to misophonia? And I don't really know why, to be honest.
Adeel [24:36]: Yeah, that's a good question. I mean, obviously, there's a lot more ground, there's more shoulders to stand on, I think, in the LGBT community with a lot of people who've done that, you know, that advocacy work ahead. Misophonia is much newer, maybe, Yeah, there's always some similarities, but there's a lot of unknowns still. And the hesitation, I guess, is understandable.
J [25:03]: Yeah, that's exactly right. And I think for me, part of the hesitation, too, is that I'm a Midwestern nice guy. I really don't like conflict. I want people to get along. So it's awkward to have conversations about why... Inside in this moment, I'm like filled with rage and really angry. And, you know, it's maybe part of the hesitation is because it doesn't comport with my self-image. So there's kind of this like. Dr. Jekyll and Mr. Hyde kind of thing going on.
Adeel [25:34]: Exactly. When you're doing your work and obviously talking about important issues with LGBTQ advocacy, do you ever get that rage in your work when you were actually going out to meet people?
J [25:52]: Yeah, it's definitely two very different kinds of rage. So when I'm doing advocacy work, it's kind of the righteous anger. It's something... that conceptually I understand to be unjust or some kind of harm. Whereas with misophonia, it's just like lizard brain. You have to fight this threat rage.
Adeel [26:09]: Fight or flight. Yeah. Right.
J [26:12]: And, um, you know, in doing my work, I often encounter people who are very, um, anti-LGBT and really pushing back on what I have to say. And then when those people do something that triggers me, it's kind of like, oh, now here we go. Yeah, now you're gone. But generally speaking, when I'm running a training or in a group setting like that, similar to when I was in the classroom, I have a lot of control over, let's schedule the lunch to be at this time so that I then know that I can go do the prep work while other people are eating. There's a lot of things like that that you can control.
Adeel [26:47]: That would be amazing if in the future there was a MISO advocacy job where people were giving trainings to people professionally. That would be sometime in the future maybe, maybe not in our generation.
J [26:59]: Yeah, I've heard you talk about the need for educating HR professionals, and I think that's really right. I think you're absolutely right that there's a lot of wasted talent because workplaces aren't set up to help people understand sound sensitivities.
Adeel [27:17]: Yeah, absolutely. I mean, and I've said before, this is a definite bottom line impact if you can keep your employees focused and attract more employees who are super talented.
J [27:27]: Yeah, absolutely.
Adeel [27:28]: I wish I had more time to do that, but I think that hopefully I can see that being a trend hopefully in the next, in the coming years.
J [27:36]: Yeah. And I'm not, I don't know if there is the empirical data to back up the, correlation between IQ and misophonia, but I'm certainly happy to believe that for the time being.
Adeel [27:46]: That's probably, yeah, totally subjective statement there. But no matter what IQ, just the breaking of concentration and all the context switching that happens day to day when we're triggered and then having to go back to work, that's a lot of time lost and energy spent trying to recover from that.
J [28:11]: Yeah, and importantly, that energy is spent invisibly. So managers then look at your performance and think, what's going on with this person? And there is an explanation. There just isn't the space to give that explanation a lot of times.
Adeel [28:25]: Right. I mean, sometimes it feels like I just came back from an hour-long commute. Just the energy of trying to get over something. Totally. So what kind of, I'm curious, what kind of, like when you do a training, is it, you know, are you writing, like creating documents? Is it more in person? I'm curious, maybe there's some tips that, about effective trainings and these kinds of issues that we can kind of use maybe for a misophonia type training.
J [29:00]: Yeah, that's a really good question. So I found that there are kind of three things that tend to be convincing for folks, depending on their viewpoint or their value system. So usually the most powerful thing is stories, personal stories that put a face to it. That's why the movie Quiet, Please was so impactful, I think, because you really saw people talking about it. And that's why this podcast is a powerful tool as well. Um, so there's the personal story. There are some people that are convinced by the facts. So, you know, putting the data and research in front of them and saying, this is neurological, there's a scientific case to be made for this. That's very convincing. And then the third category of folks, I would say are people who are convinced that there's a need in terms of impact. So that HR professional where you say like, listen, you might not be moved by the story or the science, but maybe you'll be moved by increased morale or improvement to the bottom line. I think good training will use a combination of those three elements to try to reach as many people as possible.
Adeel [30:11]: Yeah, that's really great to look at it as those three buckets because those are really strong ways to influence people.
J [30:22]: The tricky thing with misophonia, and I think I've heard you talk about this on the podcast before, the thing that I have a hard time getting people to see is the difference between like, oh, I also think that's annoying versus a misophonia reaction to it. I've spoken with people who say, oh, I think I have misophonia. And I'll say, oh, wow, tell me about your experience of this. And it's pretty clear that they just find something annoying or kind of gross. But getting them to really understand that it's that almost feeling of panic and being really almost out of control when a trigger sound happens.
Adeel [31:04]: Yeah, no, you're right. We all kind of shake our heads internally sometimes when we hear people who don't fully understand the, like you said, Jekyll and Hyde switch that happens and are surprised at how quickly that switch can happen.
J [31:19]: Yeah, I think about that with my partner a lot because there will be moments where, and I hate this, but I'll be in a perfectly fine mood, absolutely wanting to chat and, you know, kind of, just pal around and then a sound will happen. And within a second, I'm in a terrible mood. I can't concentrate. I'm annoyed. And, you know, I think about it from his perspective, it must be kind of strange to live with someone who can just really radically change in their emotional relationship to a given moment. Um, and usually I can just say, Oh, listen, I just need a minute. You know, that sound caught me off guard, but it's, um, that's surprising to me and I've been living with it my whole life, how quickly that can happen.
Adeel [32:04]: Yeah. And, uh, and yeah, I guess, um, yeah. Does he kind of like see it and then just kind of step back or does he, uh, try to maybe engage and push back a little bit?
J [32:17]: No, he doesn't push back, which I really appreciate. I think, um, you know, the, the only time it's really bad is if maybe we're having an argument about something else and then it happens and he's kind of like, Oh God, I thought we were talking about X. Yeah.
Adeel [32:35]: And has his experience as a gay man kind of helped him? Do you think that that's kind of helped him kind of be more sympathetic maybe with what you're dealing with? Because it's something so personal, so internal that he maybe kind of understands at least that aspect of it?
J [32:58]: Yeah, I think so. Because I think for those of us who live with some kind of minority identity, this isn't always the case, but I think you can draw on that experience to then have empathy for other experiences that are different from yours, but you can kind of see that the logic is the same. You know, so certainly it's not the case that just because you're LGBT, you're like a good and sympathetic ally to other folks. That's not necessarily true. But I think if you're a thoughtful person, which he certainly is, you can kind of say, you know, I know what it's like to have a feeling inside that you can't discuss and how difficult that can be. And then kind of by the transitive property, apply that to this experience.
Adeel [33:43]: And yeah, I guess getting to around 40 minutes or so, anything you want to share with folks that are listening as a kind of av listener yourself?
J [33:54]: Yeah, absolutely. I mean, things that I've found helpful, being in counseling has been helpful just because it's helped me manage things like anxiety. And I found that if I'm able to cope in a healthy way with the other challenges of being a human being and being alive then i have more bandwidth to to handle the misophonia in a way that is manageable so i think for me it's about kind of the experience of misophonia can be so overwhelming and it can just grow to take up your whole life that anything you can do to kind of compartmentalize it and be like okay, so like that's actually my anxiety and this is stress about work and this is misophonia and there's separate things to deal with, then that helps to keep it from just being so overwhelming.
Adeel [34:47]: That's actually an interesting point. So, you know, we know that stress exacerbates things, stress in general. But what you said about when you maybe are able to handle other things like anxiety in the ways that are helpful to that condition for you, that gives you more bandwidth than to handle misophonia separately? Or does it give you more bandwidth in terms of like, it just doesn't bother you as much or you can kind of like, you have more time to deal with it and recover faster. Yeah.
J [35:24]: It's more the latter. So the way that I think about it is that on a good day, I probably use 30% of my mental energy managing my misophonia, whether that be managing triggers, anticipating what's going to happen, or just dealing with having been triggered. So that's kind of a given. And then if that number goes up to 60%, then I'm probably not going to handle other stressors as well because I've just got less energy. So the extent to which I can kind of, when those things all start triggering each other, so the sound happens, that makes me more anxious, that makes me more stressed, you get into a vicious circle that just intensifies the negative feelings. Whereas if you can kind of keep things at a manageable level, then, you know, it's inevitable that all day there are going to be triggers all day long, but it prevents it from kind of spiraling. So I found it helpful to try to create a space to sit down and think like, okay, I'm feeling this way right now. What are the components that are going into this feeling and how can I engage in the activities that I know will help lessen that stress, lessen that anxiety, or, take a walk to decompress from having been triggered in terms of sounds.
Adeel [36:45]: And when you take that time out, is it literally like you step away from the situation and sit down and think about it? Are you writing something? Are you writing in a journal maybe or trying to meditate? Curious if you have any specific patterns there.
J [36:59]: Yeah, I think if what I need to do is just get away from the sound so that my body can return to normal then usually i'll take a walk or put on my headphones or step outside for a minute but when i'm doing that more kind of contemplative work and trying to reflect on what's happening i tend to do that while walking because i get to be outside and the action of walking kind of gives me a little bit of a sense of purpose and movement which frees up my mind to do the thinking. I used to run. I used to be a long distance runner. I can't really do that now because of my knee. But it was a similar thing where having the physical activity that makes it easier to kind of do the thinking.
Adeel [37:46]: And did you also find that just exercise in general helps? You know, obviously it helps reduce stress and whatnot. Have you noticed a link between those two?
J [37:58]: Yes, definitely. And again, it doesn't make the feeling of the trigger any less, but it diminishes how long it takes me to recover, I think.
Adeel [38:09]: Also, especially when you're running or taking a walk, you tend to be on your own. So it's another great solitary activity. That's true.
J [38:22]: And you know, the two other things that I would say, for me... I'm triggered less by somebody who I know is trying to be careful and who is being considerate. Even if they're still making the sound, if they know that the sounds bother me, there's something about that kind of care that makes it easier. So I think telling the people around you what's going on so that they can provide that care for you is important. And then lastly, humor. Yes, right. releases good endorphins, it lightens the situation. I'm a big one for making fun of myself, so sometimes I'll kind of use that self-deprecating humor to help this along. But anything to kind of break the tension and move past that fight or flight response is going to be good.
Adeel [39:16]: Yeah, I think whatever has been wired in your brain to make you think that it's a dangerous situation, the humor or the, you know, just knowing people are somewhat considerate can kind of like tell your brain that you're not about to be murdered.
J [39:34]: Part of my reticence to talk about it is because I don't want people to be walking on eggshells around me. But at the same hand, I do want them to be doing that. It's tricky. It's difficult to kind of feel as though people are understanding that this is a reasonable request and an appropriate request. And it's not you trying to bully them or be unreasonable. There's kind of a fine line there. But when you hit that fine line, it does make things better, at least for me.
Adeel [40:11]: Yeah. And speaking of things better, I'm curious, you know, in the LGBT community, there's there's the campaign of it gets better. I'm curious, like, how do you feel about your misophonia now at this point in your life? Do you feel like it's obviously you had more triggers, but you probably have more control. Would you tell people that?
J [40:33]: uh who are struggling coming up in school like it it gets better is that a um you know that is that a something that you would you would tell people i don't know it's a good question because you know to be perfectly honest i'm really scared by people who say like i get more triggers every year you know and it seems to there's definitely folks for whom this experience is one where it doesn't get better so part of me is is worried about that and i haven't seen it happen too much in my own experience, but I'm also only in my mid-30s, so kind of TBD on that in terms of triggers. But what I will say is that if you're fortunate enough to be able to live a life where you have more control, that helps a lot. So not having to be in classrooms, not having to be in open plan office spaces, which is probably the worst idea of all time.
Adeel [41:30]: Yeah, those days are kind of... I think they're numbered, thankfully. I think you can have open, as long as it's kind of a mixed-use space where there are places to go to. That movement, I think, is important into different spaces.
J [41:46]: Yeah, I think that's right. Knowing that you have that shelter that you can go to if you need it. Just knowing that it's there makes it easier to deal with something for me.
Adeel [41:57]: Right. And yeah, I will say on open, as an engineer, you can get really stressed out if you are stuck in your office and you're stuck on some problem, maybe some coding issue, where you could relieve that stress just by talking to the guy or girl sitting next to you or woman sitting next to you. So it can kind of help being so close to other people, even if occasionally they're triggering you just by being able to solve problems faster.
J [42:26]: Yeah, that's a good point, that kind of collaborative approach.
Adeel [42:30]: Yeah. Well, Tim, yeah, I want to say thanks. It's good to finally talk to you. And I'm wishing you a very happy Pride Month. Hope we can all party in some way so we'll be a little different than most years. Happy Pride to everybody out there. And yeah, thanks again for coming on the show.
J [42:52]: Yeah, thank you so much for having me. And again, thank you for doing this.
Adeel [42:56]: Thanks, Tim. Great to hear these perspectives. Once again, I hope everyone is having a great Pride Month, however you're celebrating. Remember to check out mesolist.com and submit your business. Music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [43:24]: Thank you.