#209 - Kathryn
Transcript
Unknown Speaker [0:04]: Episode 209. My name is Adeel Ahmad, and I have Misophonia. This week I'm talking to Catherine, who runs an ecology non-profit in Southern Oregon. Catherine shares her journey with Misophonia, particularly how it's impacted her life as a parent. She reflects on her childhood experiences with sensitivities, the lack of understanding from those around her, and how her relationship with her husband has provided a supportive environment. We talk about the impact of misophonia on her relationships, particularly with her daughter, and strategies she employs to manage her sensitivities. Katherine also explores therapeutic approaches. We talk about psilocybin and acupuncture, and she emphasizes the importance of understanding and support from family and friends in helping. After the show, let me know what you think. You can reach out to me by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. By the way, please head over, leave a quick rating or review wherever you listen to the show. It really helps move us up in the algorithms and reach more misophone. A few quick announcements. If you want to come on the show, just go to misophoniapodcast.com and click the Be A Guest link. And there's an easy way to book a time slot. There are also guides for home improvement. for a quieter home on the website, misophoniapodcast.com slash guides. And I also want to remind folks to check out misophoniapodcast.com slash research for a new platform I'm developing to create novel research proposals based on past literature and stories from the podcast. And if you want to support the show, the misophonia.shop is open. There's lots of merch there and there'll be more coming. So please take a look. And speaking of support, thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophonia podcast. All right, now here's my conversation with Catherine. Catherine, welcome to the podcast. Great to have you here.
Kathryn [2:22]: Good to be here.
Unknown Speaker [2:24]: Awesome. So do you want to, yeah, let us know kind of about where you're located and stuff.
Kathryn [2:29]: Yeah, I live in Southwest Oregon.
Unknown Speaker [2:33]: Cool. Okay. Not in the Portland area. Like maybe, what is that? What's around there?
Kathryn [2:38]: I live in Medford. There's also like Ashland. There's a couple of those smaller towns. It's just, yeah, Medford, Ashland, that area.
Unknown Speaker [2:47]: Yeah. So, yeah, I've talked to some people from, I guess, from Portland. Yeah, so I guess, what do you do over there?
Kathryn [2:56]: I'm an ecologist. I run a non-profit and we do sort of plant-based restoration work and advocacy and, you know, work with restoring pollinator habitat and growing native seeds and all kinds of cool stuff. It's a dreamy, dreamy job.
Unknown Speaker [3:17]: Awesome. And you started the nonprofit or you were running it?
Kathryn [3:21]: I did. Yeah. I helped founded it. Cool. Back in 2019, the understory initiative.
Unknown Speaker [3:27]: Cool. All right. All right. Um, yeah. So Catherine, yeah. You want to tell us kind of what's, uh, maybe, maybe starting kind of within the present, like, um, how's misophonia in your life right now?
Kathryn [3:42]: Yeah, I, I'm really in it. Um, I feel like, uh, I'm trying a lot of things currently, um, because I've been really struggling in a very particular way. Um, specifically with being a parent. And so I've been doing, yeah, I guess I would be interested to share some of the things I've tried. I'm kind of like right in the middle of seeing if anything is actually going to work or make a difference. So I'm sort of on that sort of discovery path of like, what can I actually do about this to make life a little bit easier to manage?
Unknown Speaker [4:24]: Yeah. So when you say things are getting bad as a parent, is it your child that's triggering you or things around you as your as your parent?
Kathryn [4:34]: Yeah, so I adopted my daughter with my husband in 2020 and she was an infant. And I think the adoption process was great, but I just a very immediately Well, I guess I didn't realize it at first, but I think what was going on is I was just being highly triggered by her and just sort of like always having to be in proximity and like little kids, you know, you have to sit with them to eat. There's just a lot of contact and you can't just step out of the room or do the normal things you do with misophonia to... you know, remove yourself because you're in charge of taking care of that little human. And she also, I think, triggered me in ways that I hadn't really experienced with other people before. So I didn't quite catch on right away. And so I thought I just hated being a parent, basically, for the first couple years. I thought it was anxiety or trauma or, you know, just sort of not being able to handle the experience particularly well. But You know, after kind of working through, you know, a lot of cognitive behavioral type work and dealing with my thoughts, I still baseline felt like on a nervous system level triggered in her presence almost constantly. And it just wasn't, it wasn't livable. I mean, I just couldn't, I was reaching a breaking point where there's just so much negativity building up. I was like, this isn't good for anybody. And so then, you know, I ended up with a therapist who helped me key into the misophonia part of it by just recognizing that a lot of the struggles I was having with her revolved around sounds. And I just, I had sort of put misophonia as like a thing in the back burner. Hadn't really been a big part of my life for the last 20 years, which I can go into why I think that is, but... Yeah, it just, it caught me off guard. I sort of misidentified it, even though I knew that I was somebody who has misophonia. And so I've been kind of just unraveling that and trying to figure out, like, what do I do now that I recognize that I, you know, have a brain condition or a disability that kind of makes me allergic to my own kid. So that's what I'm in. Yeah.
Unknown Speaker [7:08]: So, yeah. No, interesting. Thanks for sharing that. It looks like you've been through a couple therapists. Did the current one know about misophonia beforehand?
Kathryn [7:21]: She didn't.
Unknown Speaker [7:22]: Or did they just kind of learn about it? Didn't, okay.
Kathryn [7:24]: No, so the reason I went to her was because, again, I was thinking this was all trauma-related, and so I wanted to do EMDR, which is that bilateral stimulation thing. therapy for people who have, you know, have PTSD and things because I thought I had complex PTSD. And so when we did our first session, you're supposed to revisit a really traumatic experience of your childhood. And for me, like the The experience I revisited was just like being on a road trip with family and having people being eating chips in the car while we drove a long way. And like that really stood out to her as not a typical trauma experience. And so then she. did some research on her own and was like, hey, you know, this stands out to me as being not your typical PTSD situation. There's this thing called misophonia. Are you aware of it? And I was like, oh, yeah, I have that. And she was like, um, we need to talk about this. And so she she really encouraged me to I think I had a lot of shame around it and I didn't. I had just decided that there's nothing to be done. So don't think about it. Don't try to do anything for it. This is just your life. Um, and find other ways to, to live. Um, and she was like, I think we can, like, there's a lot of new research out recently and I think we can try different things and we should at least attempt to do that. Um, and I just had a lot of shame about even putting resources into like looking into it or trying, you know, to fix it.
Unknown Speaker [9:12]: Yeah. So did you... So then you knew about Misfonia, obviously. But when you had... When you adopted... After you adopted your child, you didn't connect that to Misfonia until you talked to this therapist?
Kathryn [9:27]: Or... Yeah, it happened. Yeah, it just... Like I said, the way she triggered me... And I just never spent time around little kids previously. And so... It just, and I think that there's so much intensity around being a parent and it was during the middle of a pandemic. There's just a lot going on. Like, I think I just, my, I thought of myself as somebody who primarily had an anxiety disorder who also struggled with sounds. And so that was like kind of the first thing that came to my mind is like this strong reaction I have to being around her is about anxiety and trauma. it's yeah it just wasn't it was so constant that it just didn't like usually the the misophonia response like it feels like uh kind of like brief sort of episode i guess but with my experience of being a parent is like that episode never ended I was just in an activated nervous system state every time I was around her. And so there was no, I mean, there was, I'm sure like dips and valleys, but it just felt like anxiety. It didn't feel like my normal, you know, misophonia, like the second, you know, I just want to leave this room right now. It felt like more encompassing than that.
Unknown Speaker [10:52]: Yeah, it didn't feel like fight or flight. It was a constant. barrage yeah i guess yeah just a constant your your nervous system was just kind of shot and did not recover right um so so what did your um what did you we'll get to the path love to get to the past uh obviously but um currently like i guess maybe what then did this current therapist after having gone through the research start to work with you on so she um
Kathryn [11:25]: could encourage me to find an audiologist in my area that could, you know, do some testing and, you know, help me. She's like, this is out of my realm. Cause you know, this is like a neuro-physical issue, but I want to support you in getting the help you need. And so I, you know, looked at my insurance plan and tried to find a audiologist in my area. And when I called and told them about my condition, there was just a lot of like, uh, I got brushed off as like, you don't know what you're talking about. This isn't real. Um, they referred me, they said I should talk to an ear, nose and throat person. They were just like very confused, um, and didn't know about the condition, didn't take it seriously. And that just sort of felt for me, it just fed into this really long history of growing up as somebody who like, this has always been, um, not believed you know it's been a thing that you know people in my family and people just can't quite grasp what it is like to live with um and so they just tell me to tune it out basically and so it just felt like a authority figure saying just tune it out like what are you talking about this isn't real and i i think that just sent me shut down and so i it just took a while it took like six months of working with my therapist just get up the guts to like find a different find somebody else who would advocate for me and like try to help me. Um, and so I did get hooked up with, uh, Dr. Marcia Johnson in Portland and she, um, it was, you know, it's a five hour drive. It's not necessarily convenient. So like she knows a few things. Right. Um, and so I had a consultation with her over the phone and we tried to work some things out, but just like the logistics of me getting into Portland regularly were, um, challenging. And then, um, It just turns out that my therapist, she has a hearing loss in one of her ears and wears and has an audiologist that she really likes. And although this person I'm working with isn't in my insurance plan, they're out of sort of the service provider list. She knew about misophonia. And so she, you know, basically it was like being referred by somebody who's like, well, I really like my audiologist. Maybe you should call her. And I did. And And then she was like, yeah, I know what that is. I have treated it before. And I was just like, oh my gosh. And so that set me on a path to work with her. And then there's also a handful of other things that I tried just because it had gotten so bad that I couldn't function in my family.
Unknown Speaker [14:15]: Gotcha. Yeah, I mean, just a note about audiologists. Marge Johnson knows a lot about, it's funny, obviously she kind of, in the 90s, was kind of really probably the first person that really identified it. But, I mean, for the record, it's not even an opinion. Audiology is not the answer. Yes, it has to do with the ear. It has to do with listening. But I look forward to the day when we can take audiology out of the equation as much as possible. There's research going into it, but it's not the answer. And it just shows how misunderstood misophonia is, not only amongst people, but amongst... researchers and I'll put double quotes there air quotes right but let me get off my soapbox and go back to back to kind of like your childhood like when did you start to recognize it I you know one of those people that has a hard time remembering a lot of their childhood but there were a couple things that really stood out to me when I was in grade school I think third fourth
Kathryn [15:34]: fifth grade range. I did Montessori. So you're in the same classroom for three years with the same group of kids, same teacher. And like that teacher was sort of your main educator. You'd go to like gym and art, but that was it. The rest of the day you spent in that room. And this particular teacher had a very sharp sound to her S when she talked. And I remember it just being like, physically. It's just excruciating to be in the room with her. And I, I know that she would have like story time and we'd sit down in the circle and she decided, I don't know why to read Moby Dick of all things to this class of, you know, kids that could barely understand. And so I remember just hating Moby Dick, hating her, um, getting so, um, overwhelmed by those feelings that i would just cry in the corner and you know ironically i was like one of her favorite students so i like learned this sort of weird pattern of hiding it very well and just sort of letting this like internal landscape of like feelings so out of control and angry like not surface um because i knew it wasn't acceptable and a I knew that I would receive shame. And I think that that was reinforced by, you know, my family not understanding. And, you know, I'm sure there was stuff earlier than that where I was acting strangely, you know, because of sounds and they didn't understand it. And they were just had the response of tune it out, like ignore it, you know, and that you get that enough, you know, and so then in the school environment, and that was really, so that really stuck out to me. And then I think there are little things like, uh, growing up, I had kind of an old heating system and it would make these clicks all night and I just would have the hardest time sleeping. And, you know, nobody, it was, you know, the nineties, like I didn't, I couldn't just go to the store and like bite earplugs. I didn't really even know that that was a thing. I was a little kid. And so I would like put tissues in my ears and like cover my head with a pillow, but I could always hear the clicking, um, enough, uh, where I just would have a really hard time sleeping. And so I had insomnia and, then there's just other, you know, family issues surrounding that. There just wasn't room for me to struggle with this thing because I had to also grow up really fast. And so I think there's just like a combination of factors that just made me kind of like push it to the side.
Unknown Speaker [18:12]: What do you mean by grow up really fast?
Kathryn [18:16]: Um, you know, my growing up, you know, we had a divorce that was really challenging and my family and my mom, um, I would say is like sort of undiagnosed ADHD almost to like a non-functional level. Like she isn't, she wasn't really a caretaker that could handle meeting my needs. And so I ended up, you know, kind of becoming the parent pretty quickly out of necessity. And then on with my dad, although he was, you know, a little more put together the person he chose to remarry with was very autistic. And I also think quite narcissistic. And so she was really intimidated by the relationship I had with my dad and my sister had with my dad. And so she did everything in her power to break that relationship so she could be the main event, right? And I think that was the narcissism. And so, you know, I essentially, didn't have my dad to rely on because he was codependent with her and all of his energy went into protecting her and her sensitivities from having autism, which we didn't even have a word for it then. She would get migraines and have sensitivities and everything was a challenge for her. And that was the focus of the family. I think I just out of necessity looked at my life and was like, there's not room for me to be sensitive and struggle. I need to set that stuff aside just to get through the day.
Unknown Speaker [20:09]: wow yeah that is a lot um to deal with and yeah very taxing on the nervous system and a heightened sense of awareness that you must have had um how about your sister how's your relationship with your sister at that time at that time it was not good um you know i'm kind of like a highly sensitive empathic quiet person my sister is you know loud and social and extroverted and
Kathryn [20:39]: She was really struggling with our family dynamic and that tended to make her pretty angry and violent. And so, you know, there was also that element of, I think I blamed my sister for a lot of the sort of triggering-ness of the household of just being really loud. And I was having the TV on, I was, you know, eating snacks. And so I ended up spending a lot of time just hiding in my room. and trying to like have a safe space. And then, yeah, I mean, it just, it wasn't a good relationship, but it's better now. And I think she's matured a lot and, you know, obviously isn't such a loose cannon as, but you know, both of us were struggling just in different ways when we were kids.
Unknown Speaker [21:27]: Yeah. How about at school at the time?
Kathryn [21:31]: I was always a really good student and I think it was just the people pleasing survival thing.
Unknown Speaker [21:40]: And were your triggers starting to proliferate as you got older?
Kathryn [21:48]: You know, it's interesting. I mean, I had that one teacher, but in high school, it didn't seem that bad. For me, generally, I don't get triggered in environments that are kind of noisy anyways. And I just, I do know that like when I would... take tests and things I would you know if somebody had a cold and was like sniffing I would need to be put in a different room so that I could focus um but I don't think that that was just sort of seen as me being sensitive it wasn't seen as like necessarily tied to the specific sound um but now I look back and I see that so there was there was some accommodations made of like you know this kid's gonna lose her shit if she's in a a room where it's quiet, you know? And I remember like even just taking like the PSAT and some of those, you know, exams as a high schooler, just being terrified somebody was going to be sniffing, you know?
Unknown Speaker [22:56]: How did you react? How did you, was it kind of very vocal or was it very still kind of like bottling it up and just shutting down?
Kathryn [23:06]: Oh, I brought it all inside. I just, I, I think I, used i basically shamed myself to the point where i would shut down and so then i wouldn't lash out um because i would i would feel the anger and then i'd feel shame about the anger and then i think the shame would it kind of worked to manage the condition in a way but in a very unhealthy way yeah definitely probably having just continuing the damage did you tell friends at all No, I struggled with, again, you know, I was kind of overly mature. I had a hard time relating to kids my age. I mostly related to adults. And it's one of those things like when you're not being triggered, you kind of don't think about it. But then when you are being triggered, you're just like... You know, I just want to do everything in my power to not freak out. And so you don't have the capacity to talk about it. I just don't think I had the words. And I just sort of assumed, like, I'm just too sensitive. I'm making it up anyways. Like, what is there to talk about? I'm wrong. The world is. Yeah. No. Yeah. And then when you do talk about it, people get offended in my experience. And I'm highly sensitive to that. So I was just like, nope, not going to. I'll just deal with it.
Unknown Speaker [24:36]: Hey, I think everyone, I'm nodding along and I know everyone else is nodding along too. So, and how about, um, well, I guess, yeah, as you got older, you said something about the last 20 years, you don't really think about it. Was there a period then that, that things kind of chilled out a bit?
Kathryn [24:53]: Yeah. So I moved away, went to college, um, in Oregon. So that's, I grew up in the Midwest. Um, and now, you know, ended up in Oregon and I, um, know pretty quickly met my now husband and i guess it was just one of those fluke things where he just um was not a triggering person to me even though i spent all my time around him um i suspect that like whatever it is in me that picks up on people's emotions and does that sort of like you know picking up of the emotional landscape around me my powers don't work on him And so being with him is kind of like being in a quiet room. Whereas being around other people, it's like very like on an emotional level, like loud. Like I sort of absorb their emotions and, you know, take them into myself. And then there's also the misophonia part. But with him, it was like, I could just be myself. And I wasn't like getting inundated by his emotional landscape. He was, and maybe that's just that he was like a secure attachment. you know, healthy human. I just wasn't around many of those. And so he just didn't give off that like needy vibe, you know, of like, I need to be taken care of all the time and it's your job to manage my emotions for me. He was like in charge of it. He knew how to do it relatively well. And so I think that just like lowering my vigilance of like, it's my job to make sure everyone around me is always happy when I didn't have to do that around him. It just like, it took down the stakes on our relationship and I could just exist with him. Um, and so it just made me less triggerable, if that makes sense. And then, yeah, there were things and like, you know, he was sensitive and would know, like we didn't like sit next to each other and eat dinner. If we did, we would always have like the TV on or some sound. And I'm sure like we talked about, you know, he knows that I have the sensitivity. It's very clear to him, but like his response was just like, okay, well let's just, build our life around you know making that not be such a big deal like but yeah it's you know there wasn't and we were together for 20 years or we have been together for 20 years and so um you know we just recently became parents and so that whole time before you know basically we were living lives that just were built in a way that weren't particularly triggering and then on top of it he was just happened to be kind of one of those people that I could, you know, that's why we got married. Like he was a really easy person for me to be around, which is just not something that I really ever experienced, especially with people who are really close to me.
Unknown Speaker [27:36]: Yeah. Wow. So all those years with your, with your husband, it really went down many, many levels, right?
Kathryn [27:44]: Yeah. Which is then when I became a parent, I like didn't get coming because I just hadn't been in it basically. You know, I'd get, I'd get triggered every once in a while, but it felt more like, at a normal level, right?
Unknown Speaker [27:56]: Yep. And another reason why it's not an audiological issue, I'll just get back on my soapbox briefly and then I'll come back down.
Kathryn [28:03]: Yeah.
Unknown Speaker [28:04]: But it's fascinating. And, you know, outside the home, you know, obviously your husband wasn't triggering you much, but when you went out into the world, did you feel like you were being triggered or maybe your nervous system was at a relatively good place and you just overall were not being triggered so much?
Kathryn [28:25]: I don't think I was being triggered so much. I mean, there were certain things that would stand out to me, like, you know, being in a car with a dog who was, like, you know, making sounds. I, yeah, I think that, again, I think a lot of my triggers are being in enclosed, quiet spaces with people I live with it didn't really translate to just everyday life and I think the reason I got triggered in school was in those like very specific scenarios of like high pressure testing or in a room that I knew I couldn't escape with this sound that was always going on or in a family unit where you can't just leave especially when you're a kid like you you rely on your family to take care of you that's where you live like you can't feasibly just check out and go somewhere else and so when I became an adult I feel like I got enough agency over my life and I had a partner who was sensitive and like accepting of what the deal was that it kind of I mean dissolved in a lot of ways you know there's still things that would trigger me but it just was you know once a week I can deal with once a week I can't deal with 10 times an hour you know right
Unknown Speaker [29:46]: That's amazing, because, you know, a lot of people will meet somebody and then have that kind of a honeymoon period, but that eventually goes away. It seems like yours was really, like, something got fixed to some level. I mean, the once a week thing, I mean, that's on par with, like, the best, I think, case scenarios of a lot of therapies and treatments.
Kathryn [30:10]: Yeah, and, you know, it's hard to remember, I guess, specifically, because our memories don't really function that well, but yeah, I mean, I just, I think that that was sort of unfortunate because it almost led to me not identifying this sooner because I had had that break and it, I had just be able to create distance from it. But a lot of it was just circumstance, I think.
Unknown Speaker [30:37]: Yeah. So when did you find out it had a name?
Kathryn [30:41]: I think it was when Marsha Johnson probably did an interview with National Public Radio in 2012-ish. So I heard that interview and I was like, oh, I have that. That is me. There's a name for it. And I think at that point I did a little research and I told my therapist and... the consensus then was like, there's nothing to be done. Like there's no cure. It just is. And then when my therapist was like, well, the one treatment we have is exposure therapy. I was like, Nope, not going to do that. So yeah, I'm just going to deal with it. Thank you very much.
Unknown Speaker [31:21]: Yeah. Yeah. I'll expose myself. I don't need you to.
Kathryn [31:26]: Yeah. I get plenty of exposure. Thank you very much. interesting okay and um and after you so that was with your one of your recent therapists or you had a therapist back in 2012 2012 yeah because i was in grad school and i was losing my mind for other reasons um and so yeah that was part of the support structure and so i it was like misophonia was just one of the things i came to the table with in my like set of things i was dealing with and it just didn't
Unknown Speaker [31:58]: rise up to be it didn't it wasn't like that important relative to like the anxiety disorder and all the other stuff i was coping with yeah we were you using i mean you you said you you know it wasn't popping up very much but did you throughout your life did you generally have coping methods other than um just pushing it down like you know earplugs um earbuds headphones things like that noise machines i think
Kathryn [32:29]: Yeah, I mean, again, I think I would use, like, yeah, like, music, certainly, like, listening to background music was a big thing for me. I honestly felt like it was rude to wear headphones or earplugs. Yeah. And so I specifically avoided that for years. Like, I felt just intense shame if somebody could tell that a sound was bothering me. Um, even my husband, which is silly, um, because obviously he knew what was going on, but because it felt so weird and deviant and like, not like I was making it up being too sensitive and it was shameful. Like I didn't want people to visual have a visual cue that I was struggling. Um, because that felt like it was exposing myself too much. And so I, I specifically didn't, do things like that other than, you know, trying to create distance for myself and other people when they were eating or like, you know, sort of do really subtle things that people wouldn't quite pick up on, you know, but then sometimes I'd find myself like in a car and I would, you know, I would just like lose my mind basically until, you know, maybe I would lash out at that point, you know, like I just couldn't take it anymore. And I would just be like, uh but i would mostly internalize it right and so you know my husband was relatively good at picking up on it and like we would have a a way of managing it sort of below the surface we didn't like explicitly talk about it was just sort of done it was like oh this is pissing you off i'm gonna stop or like you know we'll turn the radio on you know like we would we would in it together um and he has maybe some sensitivity as well so he kind of understood That's a fascinating concept. I just think I tried to hide it.
Unknown Speaker [34:22]: Something's pissing you off. I'll just stop. It's pretty easy. I wish more people would pick up on that. That's great. Speaking of visuals, and in a different context, visual triggers, do you find that that's something that you've noticed?
Kathryn [34:42]: Recently, I've clued into that. I think it's always... been the case and so I do think I have some kind of weird visual triggers not necessarily connected to the sounds but they're separate separate things with like the way people move their hands sometimes or or just I think in general really twitchy behavior that can be a challenge to be around. And, you know, my daughter, I think one of the challenges I have with her, she's extremely high energy, always moving. Like she's kind of got that twitchy, dysregulated nervous system vibe about her all the time. And so I think even when she's not making a sound, I'm dysregulated just because of her body movements and the chaos that I, and you know, even on an emotional level, because I know that, You know, there's a lot of dysregulation and little kids are just like that. They just don't know how to manage their emotions. And I, you know, as an empath, pick up on that and absorb it. Yeah.
Unknown Speaker [35:53]: Right, but I see parallels with, obviously, when you were a child, you were having to pick up on dysregulation and keeping everyone in check. So part of you, I'm sure, is feeling that. I know I do that. Does your family now, not your husband and your child, but does your parents and sister know about misophonia now?
Kathryn [36:22]: Yeah, I've done a little bit of educating. I just sent them an article this morning that came out that I thought was really... It's fine. They're like, yeah, of course. You've had this weird thing all the time. I don't think that even my husband, I don't think it's necessarily clear to them to the extent to which it impacts me because I've done such a good job of hiding it for so long. and it's been wrapped into all these other struggles. I think that they're like, yeah, that's a thing you have, but I don't think they, they don't have the experience of like how big of a deal it can be for somebody who has it, you know, which makes sense because they're not in it.
Unknown Speaker [37:09]: Right. Have you met anyone else who has it?
Kathryn [37:13]: One or two people. And yeah, it's, you know, some passing conversations. And I think that was before I really, dove deep into trying to fix this in various ways and so um i didn't really know what i was talking about when i would talk to people about it um but now i feel pretty educated on it so yeah i it'd be you know i hear of people like oh i have a friend who says that too um it's sometimes hard to know because you know a lot of people would just say oh yeah i have that too and you're like no no you don't Um, I can tell that you don't. Um, and cause you know, it is a shared experience.
Unknown Speaker [37:52]: Yeah. The one of the, at least one of the other, actually I've talked to a few people in, uh, in Oregon. One of them is actually in that kind of the, I think she's in like kind of the fish ecology space somewhere up there. Interesting person to talk to. Um, yeah. So yeah, maybe we can kind of connect offline.
Kathryn [38:10]: That'd be great.
Unknown Speaker [38:13]: Um, so yeah, I mean, I guess going back to your, your, I don't know, maybe talking about your daughter, but I know there's a lot of parents, new parents, um, or young parents who have, uh, or, or parents of young children who have misophonia. Do you tell her about it? Like, how do you manage that?
Kathryn [38:30]: Um, well, she's four. Um, so she's just getting to the age where I can say things like that hurts mommy's ears. Can you chew with your mouth closed? Things like that. um but again there's just this like raw energy that's part of her being that i know she can't control that like isn't going to go away anytime soon um and so you know there's just only so much i can do um but you know we don't sit and eat dinner as a family like we kind of go our separate ways um and so there we try to minimize it. And now we've gotten to a stage two where, you know, she used to be just so wild. The only way we could keep her calm was by having her eat stuff in the car. And so I would just, you know, bear it. Um, and now we've gotten to the point where we feel like, no, like we're not going to eat snacks in the car. Um, you can wait until we get there and then I can get my space. Um, and she can, you know, eat what she needs to eat, or at least like not eating particularly crunchy things. Or, you know, if, She's eating and she wants a hug from me. I'll be like, can you finish chewing? And then I'll come and give you things like that. So, you know, it's a balance because I don't obviously want to shame her for doing, you know, very normal eating activities and learning how to chew with her mouth closed. She's a little kid. But I also like want to take care of our relationship and, you know, have a positive outlook on being around her. And this condition just makes it so hard. to break through that layer of being triggered so much that I can't enjoy being around her.
Unknown Speaker [40:10]: Yeah, no, that's interesting. I didn't mean to laugh earlier. I also have a four-year-old, so I think about very similar things, how to walk that line of taking care of yourself and taking care of... her and also yeah not wanting to shame not wanting to you know um cause trauma again in the family because you know we've been through a lot growing up um but yeah i mean now that i know i mean you're you're kind of a great another great example but like it's not an audiological thing now i know that it's you know so many things happened early on in childhood to make me more sensitive make me more vigilant um These are things I think about when I interact with my children. I think that in itself is a good thing, having that knowledge.
Kathryn [41:04]: Yeah, definitely. I think it makes me a way better parent in a way. I think I have a lot of the problem-solving skills and phrasing things in a way where it's allowing her to be who she is, but also setting boundaries and Um, so that's been really great. I just, I'm missing out on the like warm, fuzzy part of being a parent and that's really hard.
Unknown Speaker [41:29]: yeah there's something there's a concept that's come up a few times called miss us when you're grief which is that uh the grief over you know maybe the moments that we would miss out on whether whether it's small things like getting a hug while she's chewing or or larger things like like in that whole uh whole event where we might um not not be ready for so yeah um
Kathryn [41:51]: that's interesting um and you said you know you you and your husband you talk much about misophonia and your and your child or or is it just something that you're now now we do because i you know i reached a breaking point um a few months ago where i was like i don't think i can live as a family um like this anymore and so you know and i at that time i was identifying all this stuff but I um basically decided to move into a camper that we had um at a property that I work on part-time to just like get that space and the idea was to figure out how to manage my own nervous system so that I could come back and not you know be unread you know high alert yeah constantly because it was just it was um it was just not livable um anymore and so I I kind of took a multi-pronged approach where I got space. I created a safe place for myself that I wasn't getting triggered on all the time. And then I was doing therapy, working through everything I could on that angle, trying to find something, being more comfortable wearing headphones, being more comfortable wearing earplugs. I do that now, protecting myself. in the moment. And then I also decided, you know, I really want to deal with this psychological, like neurological element. Um, so I, I also did a psilocybin journey, um, because my thought was if I could, you know, open up some neuroplasticity, maybe it would allow me to pick a different path and step away at least from the the misophonia reaction I was having so strongly to my daughter and trying to find a different way to internalize that relationship and, and build a new path. Um, as well as I've been doing like acupuncture, I don't know, it all sounds kind of a little bit woo woo, but I just didn't know what else to do because nothing, nothing else that I had, you know, been doing was working.
Unknown Speaker [44:04]: And, um, the, uh, psilocybin, how, how did that go? Like, how, how did you get it and what were you doing with it?
Kathryn [44:13]: Yeah, it's legal in Oregon. And so there is a clinic that I could go to. And I had a facilitator and, you know, sort of just aid to do that. It wasn't cheap and not, you know, I'm not really in the habit of spending money. But again, I felt like I was at a last resort. And so, yeah, it was like an all day, you know, relatively high dose. So, you know, you lose track. You can't. sort of, um, you forget how to understand time. You don't, you know, you really lose track of yourself. Um, I've never done psychedelics before or really drugs in general. Um, and so it was a very profound experience. I think I was hoping that I would have an epiphany and be able to access that part of myself that does love being a parent and does feel that like warm, fuzzy connection to my daughter. And instead what I got was. more of a connection to myself and who I am and appreciating it and valuing it so that that's really powerful. But it wasn't quite what I was hoping for. But I think it's still necessary to do. And so I'm really glad that I did it. And it just helped me recontextualize, sort of regain some energy to keep fighting this fight and not just like give up on being a parent. Not that I was going to give up, but, you know, like stepping back in my role significantly out of protecting myself.
Unknown Speaker [45:44]: Yeah. Did it have any kind of, so, you know, after the session, is it something that you, like, how do you, I guess, reconnect to that experience? Do you just kind of think back to what you went through or is it, was there some permanent lasting kind of change that happened, you think? Or maybe those are kind of the same thing.
Kathryn [46:05]: Yeah, it's kind of, I mean, to me, the way I describe it is like a year of therapy in a day. So it's a lot of work. I think my perspective on life was fundamentally changed. And my place in the universe feels different. And then also my appreciation and understanding of myself on a deep level feels different. And I think that it's a thing that I can return to that I remember fairly well. And just knowing what it felt like to, there's a difference between, you know, saying in your head, I'm worth it, or I'm, you know, valuable and all these things that we're supposed to believe. But in the psilocybin journey, like I actually felt with every fiber of my being, what it felt like to believe those things fully, as opposed to just repeating a phrase in my head that I sort of kind of believed, right? And so I can return to that and remember at least in sort of a dream way, like what that felt like. And so that's been really powerful to just, especially with like my habit of using shame and, you know, building up basically low self-esteem habits in order to manage the misophonia. You know, I have a lot of rebuilding to do as far as just like having a good view of myself at all.
Unknown Speaker [47:34]: Yeah. And has that, um, no, that's great that, that I like, I like how you put a year of therapy in a, in a day. Um, is it something that kind of helps you maybe in your trigger or recovering maybe from your trigger?
Kathryn [47:49]: No, I don't. I, I think honestly what's helped me, I haven't found anything that's lowered the triggers, but I have found with maybe a combination of the psilocybin and then honestly acupuncture twice a week, Um, my nervous system is just able to get to a calm state more easily. And so I have breaks from like, I have space between the triggers, even though they do happen fairly regularly. Um, I, I don't, I don't have control, but yeah, exactly. Like I just, I, I do experience moments of calm and stuff around my daughter, whereas before it just wasn't available to me. Um, And then when I do get triggered, you know, I have various, you know, sort of like mindfulness techniques that I can use. And I think because my nervous system is in better shape and is like being more cared for, that actually works. Whereas previously I was in fight or flight trying to do mindfulness exercise and like doesn't really work. Like you, you have to deal with the nervous system first, basically. And so I just wasn't, I wasn't dealing directly with my nervous system. I was dealing with, you know, my thoughts and, um, and those kind of surface level, like cognitive things. And I wasn't, yeah, I wasn't dealing with the nervous system and the vagus nerve and like all these parts of us that, you know, are also our system for detecting danger. Right. And a very animal level. And so I just had to get kind of animal about it and like really, yeah, I guess re-inhabit my body.
Unknown Speaker [49:28]: Yeah. How about, switching gears a little bit, how about at work, whether it's your current nonprofit or places you've worked in the past, do you get triggered much?
Kathryn [49:44]: No. We have a dispersed working situation. I have an office. We all work from home or in the field. I do a lot of outdoor stuff, so being outdoors is really great. everyone on my staff is aware of this condition now that I've been, you know, educating myself on it. And I don't, I don't really experience a lot of triggers with them, but just knowing that like, if I have to step out of the room, like nobody's going to be offended or wonder why, you know, and I can explain it and they have a lot of compassion. Um, but yeah, I just, I think that there's, I just don't get in situations very often that are triggering. You know, if I have to go to a conference or meeting, I feel like now I don't, I could just wear earplugs and not feel shame about it. Whereas before I would just feel like everybody was staring at me and wondering why I was being so rude by wearing earplugs.
Unknown Speaker [50:38]: Yeah, yeah. No, that sounds great. And yeah, being outdoors, engaging in more of your senses, I think helps. And just having people who are understanding helps. Sometimes you don't need to reach for those tools if you just know that they're there and that the people around you are understanding based on your nervous system is relaxed. Yeah, well, I mean, Catherine, we're getting close to a nap. or even though we got a little bit of a late start, but yeah, I guess, I don't know, any other epiphanies or stories or thoughts you want to share about your, about Misophonia or anything in general?
Kathryn [51:20]: Yeah, I guess I'm still trying to hang on to hope that there is a path. Um, you know, I think, you know, maybe it just be my daughter getting older, being able to be more sensitive. Like I, I, I do see improvement in my situation. Um, and I, I do have a lot of people who are actively helping me now, which is a big change. And so like, I, I try to, I'm still trying to maintain a positive attitude, but I, you know, certainly have days where I'm like, I'm still here. It's still this bad. Um, And so that's just really frustrating, especially when it feels like really important relationships are at stake. But life is long. I think that's one of the things that the psilocybin journey taught me was that there is enough time and that there is kind of like infiniteness. And to be able to feel what that feels like is a new experience to me where I definitely feel like everything is very limited and gone too fast. the things so trying to just I guess have a bit of a philosophical awakening and come to peace with it in a yeah perspective in a more healthy way and then also know that I'm worth taking care of and it's okay for people to sometimes make accommodations on my behalf
Unknown Speaker [52:54]: Yeah, that's great. We don't have a lot of time, especially as a parent, to have those kinds of philosophical moments. I think there's something key there related to misophonia, whether learning from it or ways to apply these kind of more philosophical epiphanies to it to kind of like help our nervous system. I know this sounds kind of foo-foo too, but there's something here. It's not audiology. That's the last thing I'll say about that. um Catherine this has been great um like I said for many reasons I think yeah I think this is gonna help a lot of people parents young parents um or just people who've experienced uh the kind of life you've you've had um these are themes that come up a lot so thanks for sharing and uh yeah it was really a great conversation thanks again Catherine wishing you the best especially with the young one I know it can be tough but uh as they get older it should get better If you liked the episode, don't forget to leave a quick review or just hit the five stars, wherever you listen to this podcast. You can hit me up by email at hellomissiphoneypodcast.com or go to the website, missiphoneypodcast.com. It's even easier just to do so now. Quick message on Instagram at Missiphonia Podcast. And on Facebook, same thing. On Twitter or X, it's Missiphonia Show. Music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [55:00]: you