Shaylynn (Misophonia International) - From Late Onset to Advocacy Pioneer
Transcript
Adeel [0:05]: episode 20. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Shailene Hayes, a long-time Misophonia advocate. founder of Misophonia International and the new International Misophonia Foundation. She is an author, a web designer, and I mean, really, you can find her content on Misophonia on any platform. It was great to talk to her about her origin story, which was actually a little unusual, how she got into advocacy, starting a nonprofit, her work with Dr. Jennifer Brout, and then her thoughts on lots of topics like her coping methods, marriage tips, dealing with healthcare professionals, her thoughts on the DSM, sensory regulation, sensory processing disorder, and a lot more. We also close by hearing about her other hobbies like fiction writing. Great conversation, and I'll have links to learn more about Shailene's work in the show notes. After the show, you can let me know what you think by email at helloatmissifunnypodcast.com or hit me up on Instagram or Facebook at Missifunny Podcast. And please, yeah, head over, leave a quick review or rating, even, wherever you listen to the show, on Apple or Spotify or wherever. It helps drive us up in the algorithms, which brings in more listeners. A few of my usual announcements. Thanks again 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 mystiphonypodcast. And this episode is also sponsored by the personal journey. journaling app that I developed called Bazel. Bazel provides AI-powered insights into your journal entries and guides you with new writing prompts every day based on those insights. You can explore many different therapy approaches and modalities. It's available on iOS and Android. Check the show notes or go to hellobazel.com. All right, here's my conversation with Shay Lynn. All right, well, Shay Lynn, welcome to the podcast. It's great to have you here. Thank you. So, yeah, I'd like to first ask with everybody kind of, you know, where are you located?
Shaylynn [2:09]: I am in New Brunswick, Canada.
Adeel [2:13]: Awesome. Yeah, I'm from Ottawa, born in Montreal, so I always get to talk to another Canadian. So, you know, obviously you have a lot of stuff going on. I've had a lot of stuff going on with Misophonia over the years, and we all want to definitely dive into all of those. But I guess maybe first, do you want to start, rewind, and kind of go back to, I'm sure people would be interested to know your Misophonia origin story, kind of how things kind of started for you.
Shaylynn [2:39]: I'm actually... Kind of an odd case, I'd say, just based on everyone I know. because my entire childhood was misophonia free. Like you could have any sound in my presence and I did not care whatsoever. It wasn't until I'd say I was 16 that I had very minor symptoms. And when I was 18, it all like crashed and burned and became severe. And just as an advocate, it's very, very rare to see someone who got it as an adult, as I'm sure you've noticed. So, yeah it's kind of a strange case and obviously the literature can't point to why for any of us so right it's just yeah it's weird because one day i didn't notice sounds and then the next day i noticed them all like it was so sudden like just so sudden so literally kind of overnight um I mean, I think that's oversimplifying, like, a little bit. There were a few, like, little things here and there that were bugging me and, like, they were bad. But, like, it was more I never noticed anything. And then suddenly I was noticing things. And then, like, each trigger started coming and coming and coming. And then eventually it hit, like, that plateau of these are the ones that are here to stay.
Adeel [4:00]: Right. Do you know, you want to paint the picture kind of what was happening? Like, what was your home life around that time? What was kind of going on in your life?
Shaylynn [4:08]: Um, my home life was fine, but I suffered from anxiety, depression, undiagnosed OCD, all of that. But I mean, I'm hesitant to kind of explain why I think it happened because as someone who plans to be involved in research, you know, you should never kind of have causation or like just assuming something. But I think it's important because I had undiagnosed serotonin syndrome from Paxil and I was sick for like six months and had muscle tremors in my head and I didn't have misophonia and then I did. So I think there's definitely a case study there because it didn't exist and then something happened in my brain and it did.
Adeel [4:51]: Gotcha. And your first triggers, I don't have to talk about sounds, but what kind of like typical your parents or was it just kind of general?
Shaylynn [5:00]: The visuals actually came first. Again, I'm a curious case in all regards. Chewing still isn't that big of a trigger for me unless I'm trying to listen to the TV, which is more auditory gating than misophonia. The first trigger would have been leg shaking and then pen clicking came. And then whistling, which is still my absolute worst trigger. If I ruled the world, it would be illegal. I'm serious. Straight to jail if you whistle. No. No.
Adeel [5:30]: And then, basically, how was school then? Because a lot of these triggers, I'm sure, happened at school. Pen clicking, whistling.
Shaylynn [5:38]: In my teenage years, it was like grade 11, 12 by the time. Yeah. First, I was more dealing with the serotonin syndrome and I was actually doing my schoolwork from home because of that. So like I had bigger fish to fry at that point. I've described misophonia as crawling out of one hole to fall into another because I finally got over the depression. I got the OCD in line and then all of a sudden I fell into this like deep, dark trench of misophonia, which I will say to this day is worse than all the rest put together.
Adeel [6:11]: Gotcha. And so when you were starting to notice misophonia, visual triggers, did you mention it to anybody? I'm just curious kind of how the reaction was to your misophonia.
Shaylynn [6:25]: It first got really bad when I was in university my first year. But before that, just a bit with my mother, the leg shaking was a huge trigger. And I'm a very abrasive, assertive person. So she didn't understand why, but she stopped. And like, yeah, I've always been a head on type of person. Even if I didn't have an explanation, it was, hey, you can't do that in my presence or I'm leaving. So whether that's right or wrong, that's how I've always dealt with it. University was interesting. Like before we even knew what it was, like my friends, if there was a visual trigger, they would like if we were in the cafeteria, they would physically move their body to block it for me. So I've been around like amazing supportive people the whole time. Like when I hear stories from Americans saying that such and such heard it in the symphony and they trigger me on purpose, I'm like, just totally aghast because I've never had that experience. It's more, we don't understand, but we'll help you if we can.
Adeel [7:26]: Yeah, that's fantastic. That's fantastic. Did you get any accommodations from the school? I mean, obviously it's the early days, so...
Shaylynn [7:34]: I was already listed as a student with accommodations. So also in Canada versus the U.S., you don't have to have like whatever they call it, a 504 plan. Yeah, you don't need that in Canada. It's just doctor says this is real. Do it or else. So like no one ever argued with me. I missed a lot of class, but I already had a note taker because of my wrist. But like. Even with accommodations, it was so bad that I have, like, immense, immense, immense debt from dropping classes. Like, American levels of student debt as a Canadian. Like, this disorder has cost me a lot of money. I skipped online school.
Adeel [8:16]: Oh, okay. So you'd sign up for a degree or a course or something, then you'd have to drop it, and you couldn't get your money back?
Shaylynn [8:23]: Well, I was doing my bachelor's, and if you drop a course, they don't care. And again, you have to do that prerequisite, so you have to take it again when you're ready. So I was just so overwhelmed and having a huge, huge, huge breakdown, or I couldn't be in that particular class. It just got worse and worse and worse. I did have examination accommodations to do them alone, but even then, it would be in a room with four other students, and if it's either yourself... or like yourself and nobody or there's triggers. There's no like middle ground and they didn't really understand that. But like when it was reduced people, what I meant wasn't like four people, it was zero. But just at a certain point, I was sick of torturing myself and I got into a huge fight with the school about like, just how many classes i could take at a time and like i dropped too many for my student funding that year and i just switched to online and Thank God I did because I've thrived since. I'm doing my master's since I finished my bachelor's. Honestly, I would have had a lot less debt if I had considered the accommodation of an online bachelor's in the first place. Which I always tell people, you do not have to force yourself into a mold that other people have put out there. There are so many other ways to do things. And accommodations... you should not feel bad for them. And that's obviously something I'm very passionate about.
Adeel [9:56]: Yeah. Yeah. So yeah, I'm speaking of passion. Yeah. Obviously you got passionate about misophonia advocacy at some point. Do you want to talk about kind of how that started?
Shaylynn [10:05]: Um, I think I'm kind of a weird person because the way I cope with things is I don't shut up. Like I'm a talker. I've talked my entire life. I started my first school newspaper when I was, um, 11 but then they wanted me to work with others so i shut that down i joke like i'm not good at working with others and it's not because i don't like them it's because like i have this vision and i need it to exist and i get kind of obsessed but um i dove right in like feet first just completely out of the blue and i started my advocacy with writing a book like just right out of the gate oh wow yeah well i was already a writer i had already finished a novel by this point actually two of them but the first is that quintessential you will never think about it again throw it in the trash can novel you know an author's always right and So I had finished a novel that I actually published and was proud of by then. And so I just decided to write a book. And it just like kept snowballing. And I got interviews with people. And this was 2015 that I wrote Full of Sound and Fury. and it was a lot of learning to communicate like explaining to people that you shouldn't you know talk about misophonia while you're triggered because if you attack them then you have two people in fight flight if you start with anger and then two people in fight flight are not going to have a good conversation about negotiating and conflict but yeah um and then i met dr browd while writing the book and she actually was part of the book and wrote the forward And then suddenly I was doing her website and then suddenly it's like, now when I'm starting nonprofit, like it just happened. And I never expected to be an advocate. I did do a bachelor's in political science, so I should have seen this coming. But I never expected to do a master's in counseling. I mean, there was part of me that wanted to like for years, but I never expected it like my whole life to revolve around this one disorder that I never knew existed or even had and like at a bad level until 18. It was so strange, like just my entire life and entire life purpose just kind of like flipped on a dime yeah how did how did you find out it had a name when did you first hear misophonia a family member sent me an article on it and said maybe this is what you have and at first i was a bit hesitant because the visual triggers weren't mentioned and at that time as i mentioned the visuals were worse for me um But eventually, just by learning more, I realized that the research on the disorder didn't exist to a point where we could conclude either way. And just over time, things like it went from being an advocate to then starting a magazine to... you know, working on Misophonia International, writing, like writing for HuffPost. That was a big one when I finally got published on HuffPost because people started kind of noticing. It was a little weird, like someone in a random Facebook comment on something totally unrelated to anything was like, oh, I recognize your name from HuffPost. And I was like, instead of feeling this is weird, I was like, well, this is weird. I did not expect this.
Adeel [13:30]: Yeah.
Shaylynn [13:33]: It was never a plan.
Adeel [13:34]: You're right, right. No, it sounds like it kind of snowballed and you filled a void because, like you said, there wasn't really anything going on. And obviously, I think you're involved with the Reddit as well, which is a pretty big group, I believe.
Shaylynn [13:48]: yeah I kind of I'm very hands off on that now I still am involved like technically I'm still top mod but I kind of let the other moderators run that because I can't be objective like I get no it's just I get too emotional and like I can't even google misophonia because if I google misophonia I see like articles that aren't true or wrong or like just people selling things that don't work and like my blood pressure can't take it like i care too much so i just like get upset and i've just stopped doing that like i just focus on my own work and i'm sure people think that like i'm self-absorbed or something because i'm like not reaching out but it's just me kind of saddling myself for my own mental health because you know i can't control the whole world i can only do my work and hope that it's helpful but there was a time where if i googled misophonia like i'd stay in bed for a week because i was so upset because i'd see things like misophonia is ocd and i mean things have changed a lot but for a long time it was really really really bad and yeah i just completely stopped looking because i was like if something's important it'll come in the literature and then i'll read the research and then i'll talk about it
Adeel [15:08]: So, I mean, one of the things that I'm sure keeps you going is kind of the positive impact of getting the word out. Do you have any anecdotes of people kind of like having life-changing experiences, kind of seeing some of the stuff that you put out there?
Shaylynn [15:24]: It's weird because, like, yeah, I see the good that it does, but I never want to, like... over play the role because at the end of the day there's still no treatment it's still impacting lives there's still stigma and i've yeah i had people say that you know the website's great they love it and then being involved in the coping classes people enjoying that but like i try to take a modest approach that you know every person who's helped there's still people out there who are struggling without a voice
Adeel [15:58]: Right, right. Yeah, well, let's talk about, yeah, so Missophonia International, obviously, is kind of like a big hub for a lot of the Missophonia output that you have. There's also the, you started the research network, speaking of having no research for a while. Yeah, do you want to talk a little bit about that? I guess you first started by meeting Jennifer, but it kind of expanded from there.
Shaylynn [16:22]: Well, I will say that the IMRN is still Jennifer's. I just made the website for that. We did work together, but that's still Jennifer's project. At the time, I actually said I wanted nothing to do with research, which is hilarious because I'm now technically going to be doing research studies myself. So at the time, like... When we started this, like, God, I was 21 and now I'm 29. So I'm a completely different human being than when I started all this, obviously, as we all would be. Like, I started as a lonely, sad girl who didn't leave her room because of triggers. And now I'm a married woman. So I didn't see that one coming. But it's weird because I feel like... misophonia has kind of grown with me it's changed with me the advocacy's changed with me there was a period where i got really mad and wanted to shut it all down because i was resentful i was like i never chose this i don't want to be a misophonia advocate like why is this disorder my whole life and then i like quit for i don't know it was like a year ago or something i quit for like three or four months and then i'm sitting there and like all i wanted to do was work on misophonia and advocacy and like write about it when i quit and i was like damn it i choose this it was like this moment of having to actually choose it because i never had i feel like i like i said it just snowballed like suddenly i'm writing a book and then i'm working on all these things and like i'm seeing the research and like yeah it was very overwhelming because like there was no cognizant way where i was like okay i'm a misophonia advocate and that's my life it just happened and i'm like sitting here seven years later and i'm thinking is this actually who i am is this what i want and i know that's just something that people go through with everything but it was it was kind of a weird growing pain but after that after i like actually decided to choose this that's when i got more serious and like this summer decided to actually start a non-profit because i feel like advocacy is great but research is everything like helping people is great but i feel like i've kind of reached my peak as an advocate like I can't write what is misophonia 20 more times. Like it's there, it's out there, but the research isn't. And like every single article is the same point. Like, we don't know why these sounds are triggers. We don't know what the mechanisms are. And like, after saying that so many times, like a light switch went off in my brain. I'm like, well, let's find out because I just, I felt stagnant and kind of helpless because I, when you are having people come to you and new people and they all ask the same question, okay, yeah, this is real. Sure. Fine. But what do we do about it? And it's like, yeah, you can give coping skills, but after that, they're like, okay, okay. But what do I do long-term? And it's like, um, I don't know. I wish I knew.
Adeel [19:37]: Yeah, there's plenty of tutorials about Misophonia out there, but there's precious little real research about it. So yeah, I was going to ask, what made you decide to go from the Misophonia International stuff, the writing books, to what you're doing now? Do you want to talk a little bit about the new organization, kind of what its purpose is and your plans for it?
Shaylynn [20:01]: Yeah, we're in the final stages of getting approved by the IRS that like they're processing it. So it should be like all of a sudden it'll be official. Starting it in Missouri with a social worker who I got close to, ironically, with OCD advocacy. She does not think misophonia is OCD. For anyone listening who's worried, don't worry. She does not. But yeah. It's funny because my husband left because I went away for like four days over the summer and I come back and I'm like, oh, I'm starting a nonprofit. And he's like, what? Like it was nothing, wasn't even a plan. And then suddenly it's in the works. And he was just like, you're doing what now? What do you mean? And it was like a natural decision, but a little impulsive too. Like a little like, okay, let's just do it.
Adeel [20:57]: Mm-hmm. Mm-hmm. And then, so you're, you have some co-founders, I guess, uh, the, the OCD-ish focused, uh, clinical.
Shaylynn [21:07]: Yes. And then two other Misophonia sufferers who also have written for Misophonia International, Sharon Musil, or sorry, Sharon Burns now. We're all getting married and it's confusing. Vicky Slodowski. Um, Vicki and Sharon have been writing and helping and volunteering with Misophonia International since the beginning. Sharon was in my first book in 2015. So it's actually all very full circle. Like, which is nice in a way.
Adeel [21:35]: Great. And yeah, so this sounds like the 5013 is happening. Do you have any, want to share kind of some of the initial projects that you have planned or?
Shaylynn [21:46]: Oh my God. We're actually hitting the mirror and running. Like, I'm a web designer and graphic designer before I did political science and then I did counseling, masters. So I... I can get things going like really fast, sometimes too fast. Like I'm building a website overnight for a project that I just thought of that day. And you know, all over the place. But the really big one that I'm really proud of, and I can't believe I already figured out how to do it, is starting an academic journal on Misophonia. I've already got the full website done, the framework, we're getting peer reviewers already. we're getting editors and I mean that when I'm really really passionate about because research wise when you actually read the research you can see that a lot of the citations aren't that great a lot of the reviewers aren't that great and a lot of the journals don't know what to look for and like whether a study is good or not you know that's all well and good but I've been seeing kind of problems with just the way they're being accepted because Misophonia is not known. So these journals will just accept any old opinion, you know, without actually knowing whether or not it's true. And I think it's important for there to be a space for Misophonia literature that the editors are passionate about Misophonia, that it's for them. Because look, the first ethical tenet of research is that it should benefit the community that's being researched. But I don't think we've necessarily seen that with all of the studies to date. Of course, many of them are great, but I'm not going to name any names or anything. But I think there's quite a few pieces of literature that I don't think kind of helped the community or was done with respect to our perspective of the disorder.
Adeel [23:48]: There's a recent one, which I'm sure we're all kind of aware of. We don't have to mention any names or titles, but it's still in pre-print, so hopefully there's a chance to kind of
Shaylynn [23:59]: reword i will i'm fine talking with that because i openly made a petition my name is on the petition that i started it against the accommodation study by storage at baylor um i don't want to say too too much because you know it's all private correspondence via email but i was contacted and they did say that they are editing the paper to include maladaptive versus adaptive triggers so Like, I can't take credit for any changes, but I will say that it seems like they are listening to the community and they are making adjustments. I don't know what those adjustments will be, but it does sound like there is some effort on their part to kind of reevaluate what they were doing.
Adeel [24:41]: wow that's that's what's that's promising hopefully we'll get a nice christmas present there and a revised version of that um and how about um speaking of research i mean do you i don't know how much you can say but are there specific avenues directions um that you'd like to see looked at i'm really really pushing right now to get the characteristic sound study going and we actually have a meeting to look at that and so
Shaylynn [25:09]: It's been like four or five years of people trying to get this done. And I'm trying to really push for now to meet the time. I'm hopeful. I mean, tentative, but I'm hopeful. We also actually set up an IRB for our institution, so we will be able to do our own research in a streamlined way once we get going. I have survey studies planned. And honestly, the main goal of the nonprofit was to have an organization that could have an ethical system for research. helping people and educating clinicians and persons with misophonia is an important goal too. But I think that that can only be done with a strong research foundation and a strong commitment to finding the answers that we don't have.
Adeel [25:59]: Gotcha. Do you want to tell, you mentioned that the characteristic research study, do you want to explain what that is for, for people who don't know? Or the characteristic sounds? Yeah. Yeah. The sound characteristics.
Shaylynn [26:09]: Like the actual audio properties of these sounds, because there are only like so many triggers that most people have. It's like a list of 20 and no one's actually looked at these sounds to see the frequencies, to see like what they have in common and to really pick apart the acoustics of them. and i mean i don't even understand all the specifics myself as i'm not a neuroscientist or an audiologist but the idea is basically to learn why these triggers are triggers and it's insane to me that that hasn't been done yet because it's it's not like it's completely random like I've never heard someone tell me a trigger that I've never heard before. Like they just say something random and I'm like, oh my God, really? Like it's always these specific sounds. You might only have one or two, but it's not something like completely out of the blue, if that makes sense.
Adeel [27:02]: Right, right. For a lot of people, it's also context. A trigger that a stranger makes might not be a trigger, but then if a partner or a parent makes that sound, it suddenly is a trigger. Do you see context as an important piece of it?
Shaylynn [27:20]: I think context, too, is going to depend on the person, because for me, it doesn't matter who on earth is making it. It's the same.
Adeel [27:26]: Yeah, yeah, yeah.
Shaylynn [27:27]: Gotcha. I'll even trigger myself.
Adeel [27:30]: So you self-trigger. Okay.
Shaylynn [27:32]: And I think that's where we're going to see a lot of variability. And I think too, you know, what, even if this is something completely neurological, you still have all your ideas about things in your brain. So each person is going to process their world differently, whether or not it's a characteristic of the disorder or not.
Adeel [27:52]: Right. So, um, so what, I guess, what are your coping methods, um, that you, that you kind of your go-tos?
Shaylynn [28:00]: Um, structured avoidance setting up a life where yeah i don't i like that term yeah well it's really hard for like children and teenagers to set up their lives but once you're an adult you can sit there and she's like no no thank you i'm not doing that and like working from home noise cancelling earbuds a lot of resentment like I go back and forth because sometimes I'll be like, oh yeah, I go fine. Like it's all right. And then other times I'm like, this is absolutely horrible. I hate it. Why is this my life? Like, I'm not going to sit here and tell people, oh, I come great. It's fine. It's fine. If it were fine, I wouldn't be pushing this hard for research and for what I do. Cause I don't think any of us got into the advocacy because misophonia was so easy for us.
Adeel [28:54]: Right. Yeah, avoidance of, you know, choosing the flight versus the fight. How about your family? You said you're married. Is there, you know, a decent understanding in terms of how Shailene needs to kind of, like, be left alone?
Shaylynn [29:11]: I'm actually going to share two tidbits right now. The first will be that I'm actually writing a book on misophonia and marriage. It's in the mid-stages, like, half written. Mm-hmm. So it's something I've thought of a lot. We met on Tinder. And in my first message, I said, I have misophonia. This is what it means if you can't deal with that cool. But there was never a point in our relationship where it was a question. Because it was just, if you want to be with me, if you want to pursue this from day one, I have this. These are absolute deal breakers. The end. which it is hard for me to see like people who have trouble communicating. Cause some people learn way later in the relationship that exists. Cause for me, I had, I, I'll say the privilege of knowing beforehand what my boundaries were. And if he whistled all the time or chew gum all the time, I simply wouldn't have, it wouldn't have happened.
Adeel [30:15]: Right. Right.
Shaylynn [30:17]: Like there, there wouldn't have been a, a conflict. Right. My parents, my mother has been very understanding. She has some auditory stuff that bothers her too. My father definitely has things that bother him, but he did not believe me. He once told me that the reason I didn't like whistling was because I was jealous because I couldn't whistle. But eventually he's learned to accept it mostly because I made him watch Quiet Please. And he's of an older generation that if the TV says it, it's true. Unfortunately, he's also watched Ancient Aliens, so he believes aliens brought us microwaves.
Adeel [30:58]: Are you doubting that? What are you doubting?
Shaylynn [31:02]: i did tell him i'm not disputing it but please check your sources always sage advice everybody check your sources but um he's gotten better also as i said like i don't want to sound too mean but i'm the type of person that either you accept this or i leave like i'm a grown adult if my father was like triggering me on purpose or something i'd just leave and wouldn't come back and my parents love me and they don't want me to do that so they don't i will say i can get very very snappy and at most snappy with my parents gotcha do you have any siblings no okay okay which is why i think i'm so snappy with them because there's always been a lot of triangulation and a lot of like not your typical parent versus child it was all mixed up that like if we had a problem with each other we just yell at each other so you know but it worked for us and My main way of coping when I was like really, really, really bad is flipping to a nocturnal schedule. Unfortunately, I'm triggered by lawnmowers and I live in military housing. And honestly, I should just get the environmental people against them because they mow like constantly. They never stop with commercial mowers. They've been mowing into October and the grass hasn't grown in three weeks. I once saw them mowing a hurricane and a drought. No, there's no schedule. They're completely under the blue random. If there was a schedule, it would be easier because then I could just flee.
Adeel [32:44]: But it could come from anywhere. Gotcha. Have you mentioned it to anybody? The military council? I tried to get their schedule.
Shaylynn [32:57]: Oh, I'm very... Oh, I'm a complainer.
Adeel [33:04]: Well, um, so yeah, so interesting. Yeah. So your house, um, I know you're no siblings to trigger you, but your parents obviously were very well aware.
Shaylynn [33:13]: Um, do you have like a, I only lived with my parents while having misophonia for like two years because It was like in between university as an adult. So it's not like it was, you know, the casual story of you must eat dinner with us. When I was back living with my parents, it was, they wouldn't see me for two weeks because I didn't leave my room and I was an adult. So they were like, whatever, she's fine. As long as she's alive. So.
Adeel [33:39]: Before your husband was, is there like a trail of exes that Shailene has that, you know, were whistlers and gum chewers?
Shaylynn [33:50]: No, he's like my first actual person I've been with for a significant amount of time.
Adeel [33:57]: And your friends are very, uh, your friends are very supportive. So that sounds, sounds like you have a pretty decent social kind of environment.
Shaylynn [34:04]: Well, like I said, I think it's about setting up those boundaries and not coming from a place of like aggression, coming from a place of this really hurts me. I want to be in your presence, but I can't be in your presence if this happens.
Adeel [34:21]: Yeah, that's a great way to frame it. And did you, have you talked to, obviously you're, you're, you're, you're getting a, I think a counseling master's yourself. Have you talked to, you know, since those teenage years, have you talked to professionals recently about miscarriage? I know you're, you're, you're kind of in the, in the thick of it. You probably know more than most people, but I'm just curious if, if, if you've gone to seek professional help yourself.
Shaylynn [34:45]: Not for the misophonia, but for trauma and other things. My therapist and I laugh now because when I went in the first time, I came in with a booklet on what misophonia was. I sent my doctor a booklet on what it was. I'm an advocate first, whether it's my life or elsewhere's. So I just bring them the information. I think it's very important to... to not say i think i have this to say look i have these symptoms i've been dealing this for a while this is what it is i think it's important to be firm because you know i think if you seem confused they don't believe you they think you're just a chronic self-diagnoser or something and not take you seriously yeah but also you know I did have an instance with COVID where I couldn't wear masks as easily with the SPD because the masks made me feel like I literally couldn't breathe and was being suffocated to death. Obviously I wasn't, but like, I'm not like anti-mask or like saying, oh, blah, blah, blah. Masks are a bit uncomfortable. I'm saying I put that thing on. It touched me. I literally felt like I was going to fall through the universe because of the sensory processing. And I got a doctor's note for that. That was fine. But I went into a nurse practitioner for the first time, and she told me that SPD wasn't a valid excuse or real, basically. And I already had a doctor's note from someone who was more qualified than her, so whatever. But yeah, this was like... first few minutes into the appointment i handed her literature on misophonia and said i'm leaving and she's like what and she was all offended and i'm like i'm not staying with a healthcare professional that is invalidating me and doesn't believe in a disorder and i just left And I went out to the lobby and I'm like, you know, I want to be back on the doctor's list because it's public health care. And the waiting list is over four years and I don't even care. Like, I'd rather have no practitioner than one that doesn't take me seriously. So I just went back out and I said, yeah, like, put me back on the list. And they looked at the practitioner and she just kind of like snappily was like, yeah, whatever. And it's just she didn't expect someone to question her authority, I guess. But I'm not staying with a practitioner that doesn't take me seriously. I...
Adeel [37:10]: no yeah and did you find that well how i mean in in canada in general um it's been a while since i've lived there but i guess what's your take on like the awareness of misophonia amongst the public and also professionals um
Shaylynn [37:26]: in general people here like you can say hey i have this and we'll be like whatever accepted like you can just say oh it's kind of like autism oh it's the sensory processing issue and like most people don't really care most people get you know the same news as the us although right now in canada we get absolutely no facebook news but that's a whole other thing oh right I've been kind of laughing because I use a social media scheduler and it's scheduling us articles It'll be like you can't see this post and it's like posted by Shaylin Raymond Yeah, you know it's I think it's just as saturated as anywhere else like it's the same level as the u.s. There isn't really a differentiation there um I think the difference is people are less resistant. Whereas I've noticed with a lot of Americans, if they've never heard of it, they'll argue with you. Whereas most Canadians are like, okay, cool. Whatever.
Adeel [38:30]: Yeah.
Shaylynn [38:31]: Like they don't expect a liar. And in America, it feels like everyone expects someone's trying to get one over on them.
Adeel [38:37]: There's a, there's a big, like snap out of it. Pull yourself up by the bootstraps kind of culture here. Maybe more so than Canada. Yeah.
Shaylynn [38:44]: I've never experienced that, but I must like correct for bias because I'm also the type of person that just wouldn't put up with it. So I wouldn't really know because I'd be like, bye.
Adeel [38:58]: You mentioned, you mentioned SPD, sensory processing disorder, and that, that comes up as kind of like, Hey, what's the difference between, you know, miss funny and SPD. Do you want to like maybe shed some light on that?
Shaylynn [39:08]: Well, I would like to, but I'm hoping that the study I do in a couple months will more, um, I've actually in the past couple days printed over 400 pages of research and have about 10 more studies that I'm printing. And all right, so sensory processing disorder was first found in like the 1970s. And sensory modulation disorder comes within that because there's three types of SPD. And then there's sensory over-responsivity, sensory under-responsivity, and then sensory seeking. misophonia potentially was first kind of saw under sensory over responsivity as a subset of auditory over responsivity there's still no actual knowledge of auditory over responsivity and misophonia are the same thing uh one interesting fact of sensory processing disorder is that sensory over responsivity also counts for visual and tactile and olfactory triggers so being triggered by like touching things like fabrics or certain scents those all fund fall under the sensory umbrella and a lot of people i know with misophonia self-report to also have problems with that so i think if not part of the same disorder i think at least co-occurring based on just what people are saying but unfortunately like i've tried to work with spd advocates in the past i was wondering why they were so resistant i don't blame them i just i was noticing a lot of resistance from the sensory processing community the first thing that i got told a lot by the spd advocates was like we don't like that you're associated with anger like for us it's frustration it's devastation like it's kind of like that child who is just not being taken care of who's like wants to cry and is like really upset and overwhelmed and they're like we don't like the press you're getting for the anger it's too much like they really didn't want to be part of that but also I think there's some resentment there because there is like absolutely no funding for SPD. Lucy Miller and the SPD foundation have done an amazing job and so much work, but there hasn't been a lot of support. SPD almost made it into the DSM and then was taken out by an editor last minute. And like, There's still very few even validated measures on SPD. And when you're looking from a research perspective, I found three times as many papers on misophonia than I did SPD, unless it was related to autism. i think there's this feeling of why is this like thing that might be a fringe subset of our disorder getting so much coverage because it is very interesting and it's interesting to see that the auditory whether or not that sense because it is still a sense hearing whether it's spd or not like it's it's so extreme with this particular sense that it's just blown up into this phenomenon and i don't know if it's because people are like oh my god that's weird someone here's chewing and they're angry like i i think part of the press especially in the beginning was kind of just gawking at how weird we are and
Adeel [42:27]: right it's also something we can kind of people can kind of kind of relate to you know the people who think oh i have a little bit of that and so you know i think people um get a you know get it you know are interested in things that are taken to the extreme that they can kind of relate to where spd feels like um well of course the name is so much more clinical uh misophonia is just kind of this vague term you can attach whatever you want to
Shaylynn [42:52]: Also, SPD has so many subsets. If you're not an occupational therapist, you're not going to understand it all. But also, I mean, Kumar's work in 2017 found that interoception is related to misophonia and the sensory processing people. have been talking about interoception for over 50 years which for people who don't know interoception is like our brain's ability to know what's going on in our body and like they talk about proprioception they talk about interoception and then they talk about all these things that we're now seeing in the misophony literature and it's it's weird to me that no one's talking But I mean, I yesterday was looking for SPD measures and I could barely find anything. But there's like four misophonia measures, despite the fact that misophonia, no one heard of it until 2001. And no, like it's been 10 years of research versus like. 40 and misophonia like at first i thought there was no research and now it feels like a fire sale when i'm comparing it to spd like there's just study after study after study after study and there's like a bubble misophony bubble Yeah, and, you know, some of it's good, some of it's terrible, but it's happening. Whereas SPD, it's these people who have been pushing, grinding, begging for funding, like, clawing to get it into the world, whereas Missithonia, like, they're handing out grants now, and... it's just interesting to see and to draw it all back to your question. Is there a relationship? I personally think so. Can I prove it? Um, it's kind of hard when there's like no measures. Also, you know, I've even said like when I'm reading Miss Antonia studies, like going back even to the storage paper, I'm not going to like rip up the paper itself. I'm just going to talk about the facts of their samples. Like, 50% of their misophonia sample, it was like 53 people, had co-occurring anxiety. And then they were comparing misophonia to anxiety disorders. So really they were comparing one half misophonia anxiety, one half misophonia to anxiety. it's not a clean sample and part of me wonders too like how do you have a clean comparative sample when you don't know if the condition is psychiatric you don't know if it's like neurophysiological when you can't prove that so like you're seeing studies that are just like picking the most random random sample and my thoughts are you can't really compare misophonia to anything because you don't know what misophonia is i don't know if that makes sense
Adeel [45:46]: Yeah, I mean, we're all kind of struggling with the definition. There was that consensus definition, which the consensus, I think, was that there wasn't a consensus or something like that. Yeah, I don't really want to talk about that. So I guess you're going to do a study with SPD and misophonia. So is this all going to be mainly research that your group is doing? Do you have, like, doctors, clinicians, researchers that are joining the group?
Shaylynn [46:15]: the foundation as well uh you know beyond the the founders yes uh recently i don't i want to make sure like i don't know if i'm going to pronounce his name right so dr prabu from india is actually going to join us as research coordinator and he's very smart, very good, like going over anything. I'm actually the one who kind of like put together the questions that we're going to use. And it's actually not like, the idea is to add the SPD symptoms to see if they're there, like for the olfactory, et cetera, just to kind of get that data. But the main purpose is going to be seeing what treatment people have gotten. if it worked, how long it worked for, and if the researchers were doing proper follow-ups. Because I think something that is missing in the literature is not only was there a replication, but was the original data actually backed up? Because I've seen just anecdotally a lot of people with misophonia who, first of all, have a placebo effect of finally learning that it's real and wanting to be involved in a study. And like whatever they do to them, there's this initial point where they're so relieved to learn about the condition and what happened that it does work for a short time because they're getting that placebo of, oh, my God, someone believes me. This is real. I can live with this. I can go on. And then, you know, after a couple months, it just tapers off and they go back to the normal because it's like, then they realize, oh, yeah, I do have this. It is real. Oh, it still sucks. I hate that.
Adeel [48:02]: Does that make you point to the fact that maybe there is at least some kind of psychological components where your brain's threat level has kind of reduced a bit, having learned about it and being taken seriously?
Shaylynn [48:16]: I think it's kind of an aside because misophonia, we always see in people, like, I'm not saying from a research perspective, I'm saying everything from an advocacy perspective and my own life. If you're going through a bad time, like, I'm just going to use a not misophonia example. Like, let's say that you have epilepsy and you have seizures. And, you know, no matter when you have a seizure, it's going to be bad, right? Like seizures suck. But if you're like in a really good place in your life, you have these seizures and maybe like after the seizure, you know, your supportive spouse is like, you know, I'm sorry that happened to you. Let's just watch a movie or like maybe like let's go out for dinner. Let's do something low sensory and be happy and you're really good. And you could probably recover faster. But let's say you had a seizure, but you're like really depressed already. You're not having a good time. Like your schoolwork's not doing well. Like, and this is just one more huge thing. So I think it's just about where you're at in your life. Like it doesn't change the misophonia or the seizure, but it changes everything else around it. So then your perception of that thing is influenced by what's around it, not that thing. Does that make sense?
Adeel [49:33]: Yeah. Yeah. But yeah, I mean, the perception of what's around you is kind of like the perception of your context of kind of like where you are in life.
Shaylynn [49:44]: Which is also why so many researchers are using CBT because it's not about changing the misophonia. It's about changing how you live with it.
Adeel [49:51]: Right. Right. Yeah, so I mean, speaking of CBT or other kind of therapies, I know there's no cure, obviously, there's no treatment, but maybe are there types of coping methods, but maybe therapies that you think are promising that you have found have worked on people?
Shaylynn [50:12]: I'm definitely in the camp of sensory regulation and using regulation, especially where we see this interoception in the literature. CBT and psychoeducation are great mixed in, and that's why Jennifer's work with Regulate Reason Reassure, why I think it's really great. I think CBT suffers from being a psychiatric and psychological method. I mean, there's so much variance in CBT. There's Team CBT that thinks it's OCD that wants to use exposure. And then there's Team CBT that just wants you to reframe the rest of your life and just learn to live with it. The latter, great. The former, absolute hell. So, like, I'm not going to say that CBT is bad or CBT is hurtful because that's not true. Obviously, cognitive behavioral therapy can be about learning to live with it. Like I even said before, my example of the world around you, not the thing. Like, you can influence the stuff around it, just not the symphonia. And I mean, regulate reasonably short does use some CBT in there, especially for like the reframing. I'm big on like narrative approaches too. I think that's good. But at the end of the day, sensory regulation is the only thing I find like physically changing the fight flight, even if it's a small reduction does do something.
Adeel [51:39]: And practically, is that something that you, um, that you do in the middle of a trigger or before or completely outside of triggers?
Shaylynn [51:48]: I mean, it depends. Like four square breathing is something that is technically a sensory regulation because you are changing your physiological state and that can be done in the moment and it can have an effect. But at the end of the day, if your brain senses a threat, your brain senses a threat. It's not like you're thinking about that threat. Like you can get better at it, but I still think that if you're there too long, you know, that threat's going to build.
Adeel [52:16]: Right, right. Maybe, you know, we're heading to about an hour. I don't mind going a few minutes over, but I would like to maybe take an aside and just talk about, you're a writer of non-Misfunny stuff too. Do you want to talk a little bit about your non-Misfunny projects for a second?
Shaylynn [52:35]: um funny enough one of the fiction books does have a misophonia character and that's how we survive ourselves uh there's a character with misophonia is that is that a uh i couldn't tell if that was like short stories poetry or is that's a full-on novel like a long-term narrative okay gotcha it has different characters but it kind of like flips back and forth from their perspectives yeah um I don't know if you've ever read like the Gossip Girl books or even Game of Thrones. It's like that, like different people's perspectives are part of it overall. so um that book like i said there's a character with disassociative identity disorder i talked to a lot of people with that disorder because i found it fascinating especially in the sense where it was misrepresented like another thing where the media picks up on it and thinks oh that's cool that's weird let's do something with it and then you see movies like glass and it's absolutely atrocious what they're doing to these people who are suffering in their perception so like the point was to have an enjoyable narrative story that also was based in some form of reality um there's character with depression there's the wife of the person with did and then a therapist and then the misophonia character um It might surprise people that I don't identify with the Miss Coney character in that book. She's like not me at all. The actual depression character is more like the book originally started as a narrative exercise journal in a depressing point of view. And on the flip side, I have a very dark, depressing poetry book. it's called uh the world breaks everyone or everybody i forget basically based on the hemingway quote gotcha and um then like complete complete 180 my first fiction book i wrote which was my love and my passion is about illegal street racing and the mafia that is pure commercial fiction and I love it like I can read that book and get joy if I pick up like my misophonia book I cringe I'm like I don't want to think about this anymore yeah yeah yeah
Adeel [54:50]: Well, it's great that you have that outlet. I mean, it's always good to have an outlet creatively.
Shaylynn [54:56]: I mean, the book I'm writing now is a fictionalized account of my great-great-grandmother's life.
Adeel [55:03]: Interesting.
Shaylynn [55:03]: All over the place.
Adeel [55:04]: Yeah.
Shaylynn [55:05]: All over the place.
Adeel [55:06]: You mentioned, I think, your parents having some sensitivities. Is there any trace of misophonia, do you know, in your extended family?
Shaylynn [55:13]: I don't know. They had so many other issues and so many psychiatric conditions that I think... Like we're talking about them all, like schizophrenia, OCD, like my dad's side, like just everything. Just take out the DSM and there's my family.
Adeel [55:33]: You're on the cover, right? It's like a family reunion picture.
Shaylynn [55:38]: So who knows? Probably, but would it have been their worst problem? Probably not.
Adeel [55:44]: And, you know, speaking of the DSM, what do you think about it? What do you think about the chances of misophonia? Do you care?
Shaylynn [55:50]: That's a hard question to ask me because, you know, there's the diplomatic approach of, you know, advocacy and we should always work to get misophonia more recognized. But then there's my practical approach that thinks that the DSM is a political endeavor. And, you know, it is what it is. I... I don't actually think that the DSM is as scientifically verified as they pretend to be. I think it's a political endeavor. And whichever advocates, you know, have the most money and the most influence get in there. and I mean even for disorders that exist like look at it they change the name of things like every five years like there's no consensus on even what's really in the DSM now like bipolar disorder changes every five minutes it feels like there's things that were in the DSM for like half a century that now don't exist like I think it needs to be taken with a grain of salt I know why it's important to have a manual mostly because Americans need insurance codes but I'm As a Canadian, the book's irrelevant to me. I see how it adds validity to something and helps people to understand it, especially from a clinical point of view, the people who, if it's not in the DSM, it's not real. I see how, as an advocacy tool, it's helpful because it does verify that... you know, this is accepted as real. But I think we also have to be realistic and understand, especially even clinicians, that the DSM is meant to inform, it's not a Bible.
Adeel [57:33]: Right, right.
Shaylynn [57:35]: Like, it's not the Constitution, like, we're not looking at it, like, this will never change, or this, like, yeah, there is some process for changing things, but... you can't even guarantee that the people on the DSM committee making these decisions now will be the same type of decision makers that you'll get in 10 years. Like you just, it's only updated so often and there's like wide swings back and forth. So will Mississippi get in the DSM? I think so because for some reason there's a huge push on this disorder. Now will the, you know, definition in the DSM be accurate? I have some fears there. Because even if it gets in, who got it in and what was their agenda?
Adeel [58:17]: Yeah, you can't send an email and then hope it's going to change in a few months. It's like a 10-year commitment or five, 10-year commitment to whatever.
Shaylynn [58:25]: And even if it does get in, that doesn't mean the editors will write it as the community wants it. I'm so hesitant because... I know why the DSM is helpful, but I also just hate the thing.
Adeel [58:42]: Yeah. Controversial book. And yeah, we'll see what happens. Yeah. Anything, any last words, anything you kind of want to share or plug? Obviously we're going to have links to everything that you want in the show notes. But yeah, anything you want to share now or messages for people?
Shaylynn [59:02]: I think right now, like, my really important thing is getting the Miscellanea Foundation started, the International Miscellanea Foundation. I'm working on two books right now. One is going to have a lot of researchers. The other is for couples. I'm enjoying doing that. I think the reminder I want to give people is that your best coping skills are your best coping skills like there's no right or wrong like if someone like even a study says oh don't accommodate like don't listen to that you are a person you have free will figure out what helps you and as long as you're not harming another person like obviously like just live and let live and don't be so serious about it like if you have to adapt in ways that maybe are less normal as long as you're not hurting anybody so what like you're living with this condition, you're getting by. And I think that's great.
Adeel [59:59]: Yeah. Great advice. Well, Shaylin, yeah, it was exciting to have you on finally. Thanks for all the advocacy you've done over the years since at least 2016. I know your articles were some of the early ones that I read that really kind of got me interested in advocacy later on. So thanks again. And yeah, good luck with the foundation and your masters and yeah, and everything else.
Shaylynn [60:23]: Thank you.
Adeel [60:25]: Thank you again, Shailene. Again, good luck with everything, and I hope to see great things and maybe have you on again. If you liked this episode, don't forget to leave a quick review or just hit the... You can hit me up by email at hellomissiphoniapodcast.com or go to the website, missiphoniapodcast.com. It's even easier just to send a message on Instagram at Missiphonia Podcast. Follow there or Facebook at Missiphonia Podcast or on Twitter or X. It's Missiphonia Show. Support the show by visiting Patreon at patreon.com slash misreportedpodcast. The music, as always, is by Bopee. And until next week, wishing you peace and quiet.
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