Lindsay - Finding Self-Advocacy in Misophonia Journey

S1 E19 - 3/18/2020
The conversation features Lindsay, who recounts her long journey with misophonia, starting from her distressing breakfast experiences with her dad at a young age. Raised in Los Angeles with divorced parents, she juggled between two households, leading to a unique family dynamic that barely touched upon her condition. Despite early signs, misophonia's impact became more pronounced in her relationships post-high school, where its effects intertwined with major depressive disorder and generalized anxiety disorder diagnoses. She shares how misophonia affected her education and relationships, noting a past filled with unhealthy coping mechanisms, including substance abuse and self-harm, which clouded her ability to address and understand her condition. Lindsay's turning point came in 2017 when her partner sent her an article about misophonia, helping her finally put a name to her experiences. This discovery spurred her to research and share her condition with family, though she faced challenges finding treatment or support. Lindsay's narrative also highlights her striving for self-advocacy in medical settings and navigating misophonia within her current healthy relationship, emphasizing open communication about the condition. Importantly, Lindsay stresses the power of self-advocacy, seeking support, and the importance of open conversations about misophonia with loved ones and within the community.
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Transcript

Adeel [0:01]: Welcome to the Misophonia podcast. This is episode 19. My name is Adeel Ahmad, and I have Misophonia. This week I've got Lindsay from Los Angeles. Misa has been a big part of her life since childhood, as it has with many of us. And it's one in parallel with a lot of other issues she's had to deal with and seek therapy for. This is a really interesting conversation, but how she's worked to overcome much of that, to be in a much better place now, and how all these issues have intertwined and affected relationships with others. We're in the midst right now, as you probably know, of a global pandemic known as coronavirus or COVID-19. I hope you and your loved ones are safe and healthy. Many of us are living under quarantine, limiting our interactions with others, and living under the new term of social distancing. We're also advised to be careful of coughing since the virus spreads through droplets. And some are fortunate enough to experience working from home for the first time. Now, it might be too soon or weird to think of the positives from this situation, but I can't help to hope that some of the measures being taken now turn into trends in the future that'll make life easier for us people with misophonia. Being more mindful of coughing, more open to working away from other people, and social distancing maybe becomes sonic distancing. Let me know what you think on social about how you're handling coronavirus and how it's affecting your miso. Are you finding a world quieter and with less triggers? Or are you more stressed out right now? And so this might be exacerbating your condition. We're on Instagram or Facebook at Misophonia Podcast or on Twitter at Misophonia Show. Let me know what you think. But for now, stay healthy and enjoy my conversation with Lindsay. Lindsay, welcome. Welcome to the show. Great to have you here.

Lindsay [2:02]: Thank you, Adeel. Thank you so much for having me.

Adeel [2:04]: Of course. Of course. So, yeah. Why don't you tell us a little bit about you? Whereabouts are you located?

Lindsay [2:13]: Sure. I am located in Los Angeles County, California, Southern California.

Adeel [2:19]: Excellent. Yeah, I used to be in San Francisco for many years, so definitely miss California.

Lindsay [2:25]: Where are you now?

Adeel [2:26]: Now in St. Paul, Minnesota. A little bit colder, but much more affordable, too.

Lindsay [2:34]: Yeah, absolutely.

Adeel [2:36]: So let's go back. How long have you had misophonia, as far as you can remember?

Lindsay [2:43]: My earliest memory, I was probably about seven or eight years old sitting at the breakfast table with dad and hearing the sounds of him drink his coffee and have his breakfast. And I just remember feeling so miserable inside, like I had to escape. And I Although I don't remember, now that I speak with my sister and my mom about it, they tell me stories of me being a little bit older, 10 to 13, and getting angry at them. Specifically my sister, me telling her, can you stop chewing so loudly? And me getting really upset at her and her just feeling kind of trapped, like what am I supposed to do? So for them to tell me those stories and me not remember them is,

Adeel [3:38]: like okay uh my family's well aware yeah and so yeah i mean that's not uncommon at all um that you know dad in particular apparently you know the family in general dad in particular is was your relationship okay with your dad at that point i mean it was kind of young i'm sure it was you know i um so i can talk a little bit about

Lindsay [4:02]: growing up uh i was born and raised in southern california specifically los angeles county and my parents divorced at six so i was raised in two families they lived real close to each other so i i split my time between both families so my relationship was was decent with both parents. I had step-parents growing up as well and step-siblings and my sister and I, and it was just kind of just trying to fit in with everyone and figure out what my role was in the family. But as far as my relationship with my parents, it was okay. It was clear to me that they cared about me and they wanted the best for me.

Adeel [4:55]: Yeah, so all things, I mean, yeah, despite all that, all things considered, as good as it can be in that situation.

Lindsay [5:04]: Yeah.

Adeel [5:04]: And so you remember your dad, okay, your dad's training at around seven. How did you react at that point? Would you tell him anything at that point or did you remember acting out? I know your mom and sister told you stuff later on. I'm wondering if your dad remembers anything from that time.

Lindsay [5:27]: Yeah. So that's not a conversation I've actually circled back with my dad and I would, I guess I would ask him at this point in my life if he remembers what he remembers. I just, I haven't had that conversation with him yet, but I remember, I do remember having an outwardly emotional reaction, whether it's leaving the table or getting upset, yelling. My memory is a little fuzzy. It's been a while.

Adeel [6:02]: So then at some point, your sister and your mom were triggering you or they just kind of, you know, your sister and then your mom's helping bring memories back?

Lindsay [6:13]: Well, they both have separate memories and their memories, I don't have the same memories. There's actually not a lot that I remember. through high school. Okay. As far as family and friends, as far as misophonia goes, I don't have a lot of memories. It was really most prevalent when I started getting in those relationships after high school.

Adeel [6:46]: Gotcha.

Lindsay [6:47]: Where it was most noticeable because I was really spending that one-on-one time with another person.

Adeel [6:53]: Yeah.

Lindsay [6:56]: But I guess just to back up a little bit, in high school, I remember really trying to figure out who I am, trying to fit in, whether it be at home or with my friends. I can remember dealing with mental and emotional issues, including misophonia, and It was probably in my late teens. I was diagnosed with major depressive disorder and generalized anxiety disorder. So depression and anxiety have both played a major role in my life since I was a teen. But I didn't get the proper care. I didn't see a therapist. I'm not even sure I talked to my parents about it or my friends.

Adeel [7:56]: You were diagnosed at that point?

Lindsay [8:01]: I want to say I was diagnosed shortly after. I don't remember when it was. No, that's cool. When I actually... brought myself into the doctor to ask those questions. But I know since I was young that I've been dealing with those sort of issues.

Adeel [8:31]: So by the time you brought yourself to that point where you'd gone through junior high, you'd gone through high school, was it affecting your education?

Lindsay [8:41]: So I was the student who just barely made it, but I didn't really get in trouble. I didn't really stand out. I just kind of got by in school. So I don't have a lot of memories. I wasn't very involved in school. Yeah, nothing really stands out. So just kind of getting by and trying to fit in, I guess, would describe my grade school years.

Adeel [9:15]: Gotcha. Right, so you don't remember, like, you know, misophonia being a factor that much? There were other things going on, maybe. It wasn't so much, like, necessarily sounds distracting you in school.

Lindsay [9:30]: Correct, yeah.

Adeel [9:31]: Gotcha, okay.

Lindsay [9:32]: Yeah.

Adeel [9:33]: Okay. So then we are right. So you got to your teens and you, you, you know, bravely went, went to a doctor to try to ask, ask certain questions. And you, you, you got these diagnosis where they kind of, was that kind of a revelation to you? Was, did it start to make some things make sense?

Lindsay [9:53]: Yeah. It's always nice to put a name to something and to say, To say, okay, this is a real thing. You know, someone has a name for it. The anxiety and depression. But at the time, I was picking up unhealthy coping mechanisms. So I didn't. I didn't follow through on the proper care when I was diagnosed originally. So at this point, I'm picking up unhealthy coping mechanisms like using self-harm. I picked up drugs at an early age. I was 17. Alcohol a little later on. Getting into codependent relationships and compulsive behaviors like utilizing food and shopping. I just, looking back, no one ever, no one ever showed me proper coping mechanisms. It's, you know, it's, it's not something that we have in our education system.

Adeel [11:06]: No, definitely not. Yeah.

Lindsay [11:09]: Right. And it's not.

Adeel [11:11]: Not to the extent it's needed.

Lindsay [11:13]: Yeah, absolutely. And then it's to talk about mental health as sort of a stigma. So, If that was I don't know what it was in my family, my family, we did not talk about mental health. And so I had to find these other ways to express myself and to better. Um, so those were the coping mechanisms that I had picked up, unfortunately.

Adeel [11:40]: And, um, so you, I was a lot, a lot, uh, you're dealing with a lot, dealing with a lot there. And did you kind of like assume that, um, well, I guess you probably didn't have an, we'll get to when you found out the name is Siphonia, but I'm assuming that you may be, I don't want to assume anything, but did you find that the, uh, your sound sensitivity sounds, did you think that your sound sensitivities were just part of that bundle in some way?

Lindsay [12:05]: Yeah. So what I've what I've come to find is during these years of using drugs and alcohol, I was really numb to what was around me, which I can imagine includes the sounds. But as I grew a little bit older, let's say into my 20s, I I started noticing it in my in my relationships. I had a tendency to get into a relationship and move in with that person really quickly. So being in a close space with a person and not being in a healthy relationship and using these unhealthy coping mechanisms, then I really started to notice these sensitivities that I had to sound. And my first couple of relationships, there was no name for it. It just kind of came off from my end as passive aggressiveness and just... not knowing what this feeling is inside of me and not knowing how to properly express in a healthy way what it is I'm feeling and not really knowing what the trigger is exactly.

Adeel [13:32]: In these early relationships, you're on your own. It felt like misophonia. The sound sensitivity was kind of like coming to the forefront. Was it kind of like being a really major negative part of these relationships?

Lindsay [13:48]: Yeah. I guess I thought at the time that I just really didn't like this person. And so my dislike for this person was showing... was showing up in whatever way possible.

Adeel [14:05]: So I'm guessing the passive aggressive, well, were there things like, you know, the glare, the glare that we all do and, uh, leaving, leaving, um, you know, leaving meals early, that, that kind of stuff.

Lindsay [14:18]: Yeah. Just not knowing how to express, hey, I'm feeling a certain way. Can we talk about this? No, it never happens that way. Not at that time.

Adeel [14:28]: Yeah. Well, even, yeah. I mean, a lot of us, regardless of our background, there's a lot of like, because we don't know what it is. It's like, is guilt and there's shame that gets all mixed in. We kind of assume that it's just, we're just being immature. Yeah. With these kinds of things that you were thinking about. Yeah.

Lindsay [14:46]: Yeah, absolutely. And it turns into not only a feeling of hate for that person, but a feeling of hate for myself. Just like thinking, why can't I get this right? Why can't I just be nice to this person? And as a person who was using all these unhealthy coping mechanisms, my head wasn't clear to come to the conclusion that or to seek help, I guess. My head was just so clouded with hate and worry and shame and guilt.

Adeel [15:27]: Yeah, I mean, we know stress amplifies misophonia and I can only imagine all these other issues that you're dealing with just amplified that much more. I'm sure that was the last thing you needed was misophonia on top of all this stuff or to kind of grow. What happened next? Did you start to find out what misophonia was? Did you do some research or hear about it? Or I'm curious where this went next.

Lindsay [15:55]: Yeah. So it was, I guess it was about 2017, just a couple of years ago. And I was in a relationship at the time and my partner sent me a link to an article and said, yeah, it was an article about misophonia and said, I think this is what you have. And I opened it and Sure enough, that was it. Every bullet point that was described.

Adeel [16:29]: Do you remember which article that was? I don't mean to like, this is a big moment. So I'm just curious. I know.

Lindsay [16:35]: Before we got on the call, I tried to look it up. I couldn't find exactly. There's not a lot out there.

Adeel [16:41]: No, no. And they all kind of look the same. It's got some idiot with their hands on their ears. And there's some clickbait title that's just a variation on the last one.

Lindsay [16:53]: Yes, something exactly like that.

Adeel [16:54]: If you find it later, we'll put it in the show notes.

Lindsay [16:58]: Yeah, absolutely. I'm a researcher, so I instantly went to find everything I could online about it. It's origin. I realized how new it is and that I was like, is this even real? Are they just trying to put a name on it? I still had reservations and doubts about it but it it did feel really good to have a name to it and at the time it having those articles and a little bit of information empowered me to share that with my parents and my sister because I hadn't lived with them for many years at the time. So just it wasn't, it didn't come up in conversation. And I was able to say, check this out. I have this. And then that's kind of when the stories came out about them remembering when I was younger. And so, so having a name to it was really nice to, to be able to talk about it with people who I'm closest with.

Adeel [18:15]: Yeah, I mean, that's great. You did that research. I mean, at least at that point, it didn't seem like you were too clouded. It seemed like a very lucid and a great bit of research on your part. Did that make you feel... I know for a lot of us, when we find out it has a name, it kind of, I don't want to say deadens the... It kind of makes it more bearable a little bit, I feel like.

Lindsay [18:40]: Yeah, yeah.

Adeel [18:41]: I don't know how far you got in terms of finding maybe other online communities, but did you get that far, like hearing about, I don't know, maybe convention or Facebook groups or whatnot?

Lindsay [18:53]: Yeah, so at the time, and I still don't have social media. That's not a bad thing. Yeah, right. So I wasn't able to connect that way. So it was a little challenging for me to find information. I think at the time I wasn't able to find any type of support group or convention. It's possible that, is the convention every two years?

Adeel [19:32]: It's every year. There was one year. I mean, it didn't start that long ago, but there was one year that they missed it for some reason. So it might have seemed like every two years.

Lindsay [19:40]: But it's an annual thing. So, yeah, I wasn't able to find anything. And I looked for doctors or psychiatrists who specialize in it. And... There's, I don't remember names, but there's one here in Southern California, but it was like, I didn't have the right insurance and it was going to be too expensive. So I didn't follow through with anything. So my next best shot was to talk to my therapist and my psychiatrist and no one knows what it is. So I found myself, I had a therapist at the time and I found myself bringing in paperwork to her. And I, it was like a one-time conversation and then it never really got, Oh, I think they gave me some medication like here, maybe this will help. And so, yeah, yeah. And, um, You know what? It was an anti-psychotic. Like a really mild anti-psychotic. Like, here, maybe this will help. And whether or not it helped, I don't know. Because I was... Like Dorazine or something like that?

Adeel [21:00]: Some old school thing? Yeah, yeah.

Lindsay [21:03]: Something. And then they never brought it up again. Because it's always this awkward thing. Like, I found out that I have misophonia. And then they just... look at me with the blank stare.

Adeel [21:18]: It's great to hear people like you who actually like bring it up at least. I mean, that's a that's a huge step. So.

Lindsay [21:24]: Yeah, definitely. In the past couple of years, I've realized, especially when it comes to therapy and going to the doctor, I really have to advocate for myself. And if I am the one to educate my doctors about misophonia or at least throw the word out there so people are hearing it. That's, that's the best I can do right now. Um, that is amazing.

Adeel [21:51]: Yep. I totally agree. And so, okay. So you're, um, just, just back up a little bit. You're, uh, your partner at the time, he, you know, he or she, um, sent this link to you. What were some of the, um, do you know what his or her memories were at that?

Lindsay [22:08]: Um, so we never, um, really had a follow-up conversation. And... Wait, he gave you this link and you never heard from him again? I don't really remember what the follow-up conversation was. Yeah, so... And I don't... I mean, obviously, I had expressed some... The glare and all that. Yeah, all of those around eating. And so... Let's see. Yeah, so it was kind of like a short conversation about it. Like, oh, yeah, thanks for sending that to me. That's definitely... what I have and I'll tell my therapist and, you know, try to find, try to find the cure for it.

Adeel [23:08]: Gotcha. And so, uh, yeah, I guess we didn't talk about, um, without getting too much into triggers, it was your, your, uh, your, the basic mouth and eating food related kind of stuff, I would imagine.

Lindsay [23:21]: Yeah. So at this point, definitely anything to do with, eating, drinking. I'm also I'm still currently, but at the time I was a college student. So being in the classroom was so challenging for me. And and like like I said, I don't have much memory in grade school, but as a college student, I definitely have vivid memory of not being able to focus. So once once I found Once I found out that it was misophonia, I was trying different things I found online like earbuds or earplugs, but earplugs will drown out a lot of my trigger sounds, but I miss a lot of points in class. So that was really challenging for me trying to walk that fine line between

Adeel [24:24]: feeling okay and also being able to still learn in a classroom setting yeah that's that's tough uh yeah especially noise counseling that could cancel everything out one thing um one thing i i um heard in one of these interviews um i don't know if it's aired yet but uh someone was talking about just uh going up and putting a micro like a very um a unidirectional microphone right at the front of the class that point that that basically only picks up the professor's voice and so maybe recording that and then um you know if if if it gets nasty just get out of there but uh you know leave that get that recording at least and it's um These microphones these days can be so focused that they can like only pick up what you're pointing at and kind of like they use them a lot in like movies and whatnot. That might be one thing that's useful.

Lindsay [25:17]: Yeah, that's brilliant. One thing I would say about that is missing out on the conversation in the classroom. Yeah, gotcha. The school I'm at now, we have really small classroom sizes. So a lot of the classes are focused around discussion and questions. So I could imagine missing out on what other classmates might be saying.

Adeel [25:39]: Yeah, that's tough. Yeah.

Lindsay [25:41]: It's a fine line, but I don't have any more classroom time. I'm in my graduate degree. So everything is done from home now. Yeah.

Adeel [25:53]: Well, okay. Yeah. So was that by, was that, do you think that was kind of by choice that you kind of moved to a more at home kind of environment or was it just part of the program you're in?

Lindsay [26:07]: It was, I think it was just a part of the program I was in because I, I really do think that I learned better in a classroom setting and being able to be engaged in those conversations. That's part of what I really love about going to school and learning. So it's really, really disappointing when something that I love so much is painful to me. So like being in a classroom, I love educating myself and I love talking to other people about these topics. It's painful. It's really difficult.

Adeel [26:49]: Have you thought about what you want to do after you're done with school in terms of the environment you want to be in? Do you have a choice in whatever career you want to go?

Lindsay [27:02]: Yeah, I've definitely thought about that. My goal, I want to serve LGBTQ populations primarily to support homelessness and mental health. So I don't know what kind of setting that will bring me into. It might be an office setting. But I think that's really going to be, again, about advocating for myself and asking for what I need in terms of accommodations. Right now, I'm in a great office setting where it's relatively quiet and I work very independently. So I'm able to put those earbuds in and and put some music on or some white noise and just get to work. So hopefully whatever I do in the future will be as accommodating.

Adeel [27:57]: Yeah, I would imagine. I mean, the classroom setting is not usually like the day-to-day work environment. You're not. Yeah. And so I think it'll get better, especially as you're one to advocate for yourself. I think that should be good. Who knows? We'll see. I don't want to. Yeah, we'll see.

Lindsay [28:20]: We'll see.

Adeel [28:22]: How far away are you from finishing school?

Lindsay [28:25]: I graduated in May.

Adeel [28:26]: Oh, awesome. Okay, cool. Yeah, I'm so close.

Lindsay [28:29]: Yeah, this is great.

Adeel [28:31]: Yeah, so outside of school, you know, we last left you off at the, you know, in the Middle East Code of Mental Relationships and your last partner or former partner had opened your, kind of helped open your eyes to misophonia. How's the rest of your life going right now?

Lindsay [28:53]: Yeah, so as I mentioned, that was in 2017 when I found out the name of Misophonia. So continuing to have conversations about it with my family, particularly my mom and my sister. I just feel really comfortable talking to them about my mental health. And let's see. So fast forward to 2018, last year, within a six month period, I decided it was time I had to stop drinking and using drugs. It was a really big problem at the time. This was early 2018. And so I started attending a support group for that. getting sober i was able to build up the courage to end that relationship that i was in it was it was pretty toxic at the time it was we were four years into that relationship and i was able to end the relationship i started the full-time job that i'm in now And I started my graduate program. So a lot happened in six months.

Adeel [30:16]: Yeah.

Lindsay [30:18]: A lot of really positive things, things that are changing the trajectory of my life. And in that same note... that left me open without all my coping mechanisms to really intense misophonia experiences um really intense mental and emotional experiences and challenges um so i So here I am without the drugs and alcohol, and I'm dealing with my depression and anxiety again, wrapped up with misophonia. And I finally went back to the doctor, and I was diagnosed again, same thing. But I said, OK, I need to really start receiving proper support and care. medication regular therapy regular doctor visits and it was late 2018 just about a year ago where i connected with my current partner so we're one year into our relationship and this has been my opportunity to really in healthy ways, communicate what's going on with me. Misophonia has definitely been one of our big topics. I was really fortunate. He attended the conference with me this year in Denver. And that meant so much to me. This is a relationship like... I've never had before. I went into this relationship really intentionally saying, okay, I have all these issues and you have your issues, so let's talk about it. And that's something I never knew how to do before as I was using all these unhealthy coping mechanisms in the past. So being able to talk about it as it's happening so that it's so that i'm not holding it in is is really an incredible feeling whether that's with my therapist with my partner with my family um it's all new to me um and i can't believe it after i'm 33 years old now so after so many years of this build up um it's i'm finally I'm finally figuring myself out after trying for so many years to figure out who I am. It's really incredible.

Adeel [33:16]: Yeah, that's amazing. So 2018, huge pivotal moment, year in your life. So when you went into your program, it sounded like misophonia and a few other things were becoming more acute.

Lindsay [33:33]: Yeah, yeah, absolutely. Because I had mentioned earlier using... To cloud things, right? Yeah, yeah. And so now everything is very clear and it's like, oh yeah, I live with anxiety and I have misophonia. Like that's very clear to me now. So really it being really in my face and... i'm i'm trying to be really honest with the people around me misophonia is still a fine line that i walk i still i don't know how to have those open and honest conversations with everyone like my friends my co-workers i don't really know how to have those conversations there's no script there's like a there's kind of like a script for a lot of other things and uh we're kind of like shooting in the dark That's right. Absolutely. And so, like I mentioned, I want to advocate for myself, but I also, I don't want to burden anyone.

Adeel [34:36]: Yeah, that comes back to the whole shame, guilt kind of stuff. Exactly.

Lindsay [34:41]: Yeah, so it's still there. It's still there.

Adeel [34:44]: So you entered a relationship about last year. How long did it take for you to bring up misophonia? I think I went into... Was there a sound and you went into a rage and that's how it started? Or was it, okay, before anything happens, I want you to know.

Lindsay [34:59]: I think it was that second option.

Adeel [35:03]: Oh, wow. Okay.

Lindsay [35:04]: I know it's so unlike me, but I went in, I went into this relationship really, really intentionally to say, I'm going to share everything with you because I knew that I, I was, if I'm going to be with someone, they need to accept me for exactly who I am. And They're not going to know who I am unless I tell them. So those were my intentions, to be really honest. And it's not always perfect. It doesn't always go perfectly. But I did share my experience with misophonia very early on. And we're still learning how to communicate. about misophonia to each other. There are some things that I still hold inside because I'm still trying to navigate what's appropriate to talk about and what's not and what I can deal with and what I can't. So it's a lot of work. It really is.

Adeel [36:15]: Amazing that your partner was at the convention. That's great.

Lindsay [36:19]: He was. And that was a really big deal for both of us. it really meant a lot that he would be willing to just go and learn because I'm learning a lot in the process as well. You know, we have talks about starting a family in the coming year. And so what that might look like, neither one of us have children. So if we have children, what does that look like? What would meals together look like? And one thing I really appreciated about the conference this year is one speaker had mentioned reimagining what family time looks like. You know, people, I imagine, a family dinner where everyone is talking about their days and that's the bonding time. But I have to reimagine that because that might not be realistic for my family.

Adeel [37:24]: Yeah, I mean, there is the traditional sitcom sit-down or drama sit-down, and here everybody's spoons and forks and eating. And then there's the more general after-school family time, which meal could be just one part of it. It's also, you know, hanging out in the living room. being in the kitchen for a little bit. Um, yeah, that's interesting. Cause I mean, for a lot of us, some of us, uh, I was talking to somebody and he, he's a dad who just kind of like, he's got to deal with his family. He's got a, not to deal. He's got, um, you know, an arrangement with his family where he just kind of, uh, they eat at the table he stands kind of between the kitchen and the dining room and he's standing up okay um where you know it's it's just you're he's still there still engaging but if you know if he needs to he can just take a lap around the house and come back kind of thing you know yeah absolutely and those are the things that my partner and i are are thinking about um

Lindsay [38:30]: It's really, really important for me to have these conversations now because I want to live a long, healthy life and have a healthy family. I'm trying to understand all of these mental and emotional issues as best I can now before I go into that next chapter.

Adeel [38:52]: That's really smart. Yeah. And so, yeah. So in your conversation with your partner, are there have you come to any like strategies that you're going to goals that you're going to try to achieve from a miscellaneous perspective or still just kind of like gathering information?

Lindsay [39:12]: Yeah, I think we're somewhere in between the gathering information phase and talking about. what it might look like but i i really just i don't know what what dinner time will look like he and i have very different schedules anyway i'll probably the classic nine to five and he works different hours so it might it might be that we don't have that time together anyway but um i think a lot of it's going to be learn as we go yeah So, but, but in the meantime, while it's just the two of us and we don't live together yet, but when it, when it's the two of us, there's just certain foods that we don't eat together. Yeah.

Adeel [39:58]: Yeah. Yeah. Yeah. No, and that's, that's good to at least have that awareness now. And so it's not weird later or anything you have to come up with. It's just like, okay, this is just the next step.

Lindsay [40:10]: Absolutely. Yes.

Adeel [40:12]: Do you have any visual triggers, by the way? I just had to kind of jump around a bit. I was thinking about the fact that you were in, well, you're still in school. You might be at home more, but I was curious if you, I don't know, try to sit at the front of the class or the back of the class or based on any visual triggers.

Lindsay [40:34]: Yeah, I like to sit in the front of the class. It's less distracting.

Adeel [40:40]: That probably would have been my choice too, yeah.

Lindsay [40:44]: Yeah, my classroom sizes are so small now that I only have one class this semester, and there's only three of us in the class. So it's a very different type of setting. But as far as visual triggers, if I see something, if I see a food that I know makes noise, let's say it's a bag of chips or an apple, I'm waiting the entire time for that person to pick up that food and eat it.

Adeel [41:13]: Yep.

Lindsay [41:14]: I'm not focused on anything else. Just that food.

Adeel [41:17]: Yeah. Cause that food, that, that, that act is going to somehow destroy your, destroy you completely and kill you. And that's what your brain is telling you. It's like, it's just anticipating that sound. Unfortunately.

Lindsay [41:32]: So, um, other visual triggers might just be the, the, the open mouth kind of mess.

Adeel [41:38]: Right. Right.

Lindsay [41:39]: Uh, visual triggers. Um, There's certain ways of eating, throwing food into the mouth. Let's say someone's eating grapes and they're throwing the grapes into their, I don't know. There's something about throwing food.

Adeel [42:00]: Yeah, we can go on. Right. Yeah, we can go on and on. Okay.

Lindsay [42:03]: Yeah, yeah, yeah.

Adeel [42:08]: just note it down. You said that, okay, so you're obviously very open with your family and your partner. Tell me again about like friends, you know, as you're socializing, does it, you may have covered this before, but does it, do you, are you proactive with them as well? Do they know, do many of your friends know or do you tell new people?

Lindsay [42:33]: So my primary communication is the folks that I met in this recovery program that I'm a part of. That's my main support system outside of family. And I've shared with them as a group about misophonia, but it never, I don't really have the one-on-one conversations.

Adeel [43:03]: Gotcha.

Lindsay [43:05]: I do have a friend. I spend some time with her. She's one of my primary sources of support and she knows, but it's, it's, let's say I'm triggered by some noise. It's, it's hard for me to just point it out right away. Yeah. So when the conversation does come up, it's kind of like an awkward exchange. I know she wants to support me and I know she's here for me no matter what, but I don't know. It's just hard to have the conversation like, hey, I'm triggered right now. Can we work through this in another way or whatever that might look like? So it always ends up some kind of awkward laughing situation.

Adeel [43:51]: Right. Yes. Many people listening, I'm sure, have been in similar situations like that. Awkwardly laughing through a trigger. Yeah, interesting.

Lindsay [44:04]: Although I will say laughing about it for me does decrease the trigger.

Adeel [44:12]: Yeah, that's something I've heard as well. I use it as well, just try to use humor. Dark humor, self-deprecating humor, whatever it takes.

Lindsay [44:25]: Yeah.

Adeel [44:27]: That probably just tells your brain that, okay, this is neither a fight or flight situation. It's funny.

Lindsay [44:33]: Just being able to talk openly about it, there's some power in that. It's pretty amazing.

Adeel [44:41]: Well, cool. Lindsay, yeah, this has been great. We've gone over a lot and you've been through a lot. And I'm glad that things, at least since 2018, are turning around for the better. And you're... you know, you're going out of your way to learn about misophonia. Do you have anything, do you have anything other things you want to, you want to tell people or don't have people to talk about, talk to?

Lindsay [45:11]: Yeah, I just, I just want people to know that they deserve to feel good and they deserve to take care of themselves and seek support and advocate for themselves. As we've mentioned, misophonia is relatively new. There's not tons of research yet. And support systems, they're out there. So seek support. Advocate for yourself. Tell your friends and family because a lot of the times I think our friends and family surprise us with how supportive they can be. So, yeah, everyone deserves to feel safe and happy and supported. So it's out there. Go find it.

Adeel [46:05]: Yeah, and that's important. Not to make it a sports reference, but this one is really in the early innings. So don't be discouraged if you get blank stares back or people don't know what you're talking about. There is a change happening. And, you know, I strongly believe like five, ten years down. Looking back, hopefully just one or two years down, people look back and be like, wow, nobody knew. And now everyone's talking about it or else or people are generally aware of it. Already here, you see a lot of sensory, sensory friendly nights at like museums, even grocery stores. Things are happening. And so don't be discouraged. There, you know, there are people like you out there and their resources and they're, they're growing. So things knock on wood are looking up.

Lindsay [47:00]: Yeah, absolutely. I just want to say a deal. I really appreciate you creating this space for people to talk about their experiences with misophonia because there's not a lot out there. So you're creating a really amazing outlet for people to,

Adeel [47:16]: seek support whether they're speaking on your show or listening to your show so you're doing an amazing thing i appreciate that yeah that's this whole point there's no real script here uh as you can probably tell from my random questions but it's just uh yeah we're just trying to create a space just trying to get it out there and it's more like a misophone talking to other misophones you a lot of times it's like somebody writing an article with a really bad picture and a really bad uh clickbait headline. And I just wanted to create something that's like to kind of almost try to simulate or emulate the kinds of conversation that we have at the convention, just kind of like people talking to each other outside of the sessions. And it seems to help a lot. Thanks, Lindsay. This has been great. And I wish you well.

Lindsay [48:00]: Oh, thank you, Adeel. Thank you so much. I'll be in touch.

Adeel [48:03]: Thanks so much for listening. Please find us on social media at Misophonia Podcast on Instagram and Facebook or Twitter at Misophonia Show. Tap the rating review button and give us some stars on Apple Podcasts if you can. It bumps us up in their recommendations so that more sufferers get to hear these stories. For now, stay in, stay safe, and enjoy the silence during these unusual times. Until next week, wishing you peace and quiet.

Unknown Speaker [48:48]: you