Ellen - Sharing a lifetime's journey navigating misophonia

S1 E14 - 2/12/2020
In this episode, Adeel speaks with Ellen, whom he met at a Misophonia Association convention and who moderates an online support group. Together, they explore common themes and challenges of living with misophonia. Ellen shares her journey, starting from her early realizations of feeling agitated by her family's eating sounds, leading to increased sensitivity and triggering situations in school and college environments. The struggle with finding understanding and appropriate support is highlighted, along with the coping mechanisms she adopted, such as using TV and music during meals to mask triggering sounds. Ellen's pursuit of understanding led her to therapy and eventually to self-education on misophonia, culminating in a sense of empowerment that aids her in navigating work environments and social situations. The conversation touches on the importance of community, the development of coping strategies, and the evolving nature of triggers and responses. Ellen's story underscores the complexity of living with misophonia and the ongoing journey towards managing its impact on daily life.


Adeel [0:01]: Welcome to the Misophonia Podcast, episode 14. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Ellen, who I met the past couple of years at the annual Misophonia Association convention, something I recommend people look into. As of now, in mid-February, we should be getting details about tickets soon for this year's convention. All I know so far is that it'll be in early October in Philadelphia. I'll have a link to the Misophonia Association in the show notes. Ellen also started one of the regional online support groups, in her case, for the Northeast United States. And through that, she runs that region's Facebook group and runs a conference call that happens every other week. I'll have her contact info in the show notes as well if you want to learn more about that. During our conversation here, we hit on a lot of the same themes that we all face. A classic origin story, growing up with family. We talk a lot about the challenges she faced in school, all the way up to grad school. Then later we talk about bringing up Misa with potential new friends and things like diet, alcohol, and healthy living. If you'd like to help the podcast, please leave a quick rating or even a review in iTunes to help get up in the algorithm and reach more people like you. But for now, here's my conversation with Alan. Thanks for coming out. Welcome. Welcome to the podcast.

Ellen [1:19]: Thanks for having me. It's nice to talk to you again.

Adeel [1:21]: Yeah. So for the audience, I know I've met Ellen at the Misophonia Association convention happens every year around October. So that most of us won. Well, at the time it was recording was some few weeks ago or so. And yeah, we connected there. Like I've connected with a lot of people and I'm glad to, Yeah, glad to have you here, Ellen. So why don't you, I actually kind of forget, where are you located?

Ellen [1:47]: So I'm in New Jersey, just outside of Philadelphia.

Adeel [1:50]: Oh, right. Okay.

Ellen [1:51]: Sometimes I say I'm in Philly. People are a little funny about Jersey, so it's easy.

Adeel [1:58]: Yeah, I think that show had a lot to do with that probably.

Ellen [2:02]: exactly jersey shore so what do you do again you're uh so i work um i work for like a medical practice and i do some of the business administration so i actually get to do a good chunk of my work from home it's a lot of computer stuff and phone calls um so in terms of the misophonia environment it's been definitely been a blessing to be able to do that yeah it's great i work from home too and do you have anybody else at home that's home during the day uh no just just my dog. So, you know, we get out and she, she's never bothered me. I'm sure we'll get into that, but yeah, animals have always just made me very comfortable and she never triggers me or anything like that. So yeah, we just, she usually sits right by me while I'm doing work and it's a, it's a pretty relaxed environment.

Adeel [2:48]: And that's great. And have you ever, has she kind of comforted you during reactions too? In some way?

Ellen [2:55]: I mean, she's always sort of, she's always sort of with us. So if we, If we have people over, I mean, she's always sort of around. So, yeah, she has a comfort. But I probably could have used her during my earlier years. So I'm in my 30s now. I feel a little better adjusted to the whole misophonia thing. But, yeah, she certainly could have come in handy in my teens and younger.

Adeel [3:20]: Yeah. So about those years, tell me about around when you kind of sensed something was different.

Ellen [3:29]: Yeah. So what I remember is, so I was about eight years old. So I was in third grade. I don't really remember anything specifically happening that started it. Just all of a sudden noticing a pattern of being really bothered by the way my dad was eating. So we, you know, had a big precedent on family meals and we did them every day. And, you know, my mom made all the meals. So it was up until that point, a really nice experience. And all of a sudden I started feeling agitated and I would mimic my dad's sound, which caused a lot of stress. So I've heard now, you know, in attending the conference and reading different things that that's like a fairly common thing that happens is just repeating the sound back to the person.

Adeel [4:14]: As a way to kind of cope, as a coping mechanism.

Ellen [4:16]: Yeah. So I felt like at the time that I was just so annoyed by it that I almost wanted him to hear how ridiculous it was. But of course my mimic was you know, over the top, it was exaggerated. And from his perspective, I'm sure it just seemed like I was, you know, pretty ungrateful and being pretty bratty by doing that. And it immediately became a stressor because, you know, I had a great relationship with my parents. So, you know, I love my dad to death. He still triggers me to this day. But I couldn't express that then. So I always would feel guilty afterwards. Why am I feeling that way? All he's doing is eating. And fairly quickly it progressed to then also being my mom and then my brother. So it was the three people I was most often around. It seems in talking to other people that that's pretty common too, I guess. It's unfortunately the people we're with the most and the people we love the most, which can be quite confusing when you're young and trying to figure out why you're feeling this way. Yeah, that's pretty much what I remember.

Adeel [5:22]: And did he, when you were mimicking, it seemed like, did he take it personally? Like, was it so out over the top that you... Or was it more your guilt, like you felt like he... It was more just the guilt.

Ellen [5:35]: So he never got upset with me, but it was more that, you know, other people would step in and sort of defend him, which makes total sense. If I had been in that boat, I would have done the same thing. But I just remember, like, dreading meals or I would come up with reasons why... I couldn't eat like, oh, I'm not feeling well or I'm not hungry or I have homework to do or, you know, there's always something. So it progressed throughout middle and high school. It got worse and worse. And I think just other, you know, like hormonal changes and stressors of being around kids and all these things, you know, I would definitely be very like reactionary. So I would get up from the table sometimes and yell. I have like awful memories of terrible to think about now, but one time I actually, got up and I think my mom was pretty frustrated at that point and said, you have to sit here. And I like smacked her arm because I was like, I need to get, get out of here. Um, and that's so not my personality. And it was just, it was awful because I thought, why, where is this coming from? I'm such a happy person. I love being around people. And then it's just a switch of, um, being so upset.

Adeel [6:40]: How did your mom react?

Ellen [6:41]: Yeah.

Adeel [6:42]: How did your mom react?

Ellen [6:43]: Not, not please.

Adeel [6:44]: Yeah.

Ellen [6:45]: I mean, everyone was concerned. Um, certainly.

Adeel [6:50]: What did she do? Did your family decide to, I don't know, take your therapy or anything or just kind of like talk about it or ignore it?

Ellen [6:59]: We put on that route for a while. So I started like trying to read about different things. This was sort of like pre-internet days, but I was flipping through some magazine and saw an ad. It was something about like anxiety and I think honestly it was for some medication. It described different symptoms and things. So I remember, like, carrying it out of the magazine and showing it to my parents. And I think even just doing that alarmed them. Like, okay, something's going on here. She needs help. So I did end up being a therapist, but I didn't know how to explain what was really happening and even talking to doctors about it. And then later on in college, trying to explain it to the, like, physician at the university. I couldn't, like, nobody understood it. So it was just like, well, you know, if you had your hearing checked and you think maybe it is just... like an anxiety thing or like people throw around like OCD or depression, all these different things that, you know, just trying to put a label on it, but nothing really, uh, helped out. So yeah, I think my parents were desperate for me to feel better, but just didn't know what to do.

Adeel [8:01]: Right. Because it's, yeah. Cause it seems like a, it's just, it seems like an annoyance more like to, to people who are, don't have it. It seems like this person is just extra annoyed at something.

Ellen [8:14]: Exactly. Like, can't you just get over it and, you know, going through a phase or those things. Exactly. Yeah. Or like, oh, you know, you must be having a bad day. It's like, well, you know, every day is not a bad day, but this is happening every day.

Adeel [8:26]: And so how did you cope with it then? So it sounded like you were kind of ignoring, well, not ignoring, but, you know, you're trying to get your way out of meals and whatnot.

Ellen [8:36]: Yeah. And then when I did have to sit through meals, we would turn on the TV. My family was very nice to do that. But, you know, and at first that was a great fix. And then I think, unfortunately, you get sort of used to that. And then it's like the moments in between commercials or commercial break, the TV break, just even that few seconds of silence.

Adeel [8:55]: Yeah.

Ellen [8:56]: It's so strange how that works. And I've noticed that since like I, you know, my husband and I, when we're eating dinner, we play music a lot. And someone at the conference last year, who's like 10 years younger, taught me how to like get rid of the gap between songs. Cause I was saying like, Oh, it's so nice to play music. And then, Oh, I always crossfade the full.

Adeel [9:14]: Yeah.

Ellen [9:15]: So now I know about that. And like all these little hacks are awesome. But when I was younger, yeah, it was pretty much TV. And I'm, I'm lucky my parents would, would do that. So. you know i got through it and at school um how did how was it at school pretty brutal uh so you wasn't just eventually it wasn't just your family that's triggering you you're right yeah so by i remember my middle school um so i'm you know as i know i don't want to trigger anyone listening to the podcast or anything like that so i'll try to keep it fairly general um but something that happened in seventh grade was the you know i'd always really enjoyed school And I had an algebra class, like a pre-algebra something or other. And the teacher, you know, we've been in school a few weeks. Everything is going fine. And the first test comes around and she decided to hand out hard candy for the test, which was just brutal. So that ended up being what she did every single test and, you know, any big exam at all. And then it started being like, oh, you know, it's Friday. So you guys have had a good week. We're going to do hard candy. And I just would notice that. i would just sort of like blank during that time and i couldn't focus and my grades started suffering um so it did affect your grades okay it did yeah and and i really thought for a while you know there's so many other things going on when you're that age so i thought you know that what i now know is misophonia was like a small part of things that were bothering me but that i had sort of i kind of thought i had you know a bad attitude or like couldn't cope with things other people can handle. Cause I'd think, look, everybody around me can take their tests. They can all be fine. Like what is wrong with me? So then I started thinking, okay, I must have like an attention issue, um, all these different things happening. So I never, I never thought to say to my teacher, I mean, at that time I was probably like 12 years old to say, you know, I, I really can't focus when this was happening. It just didn't, didn't even occur to me. So yeah, grades definitely suffered and that would happen. You know, unfortunately food's a big, a big part of, Celebrations, it's a big part of like, you know, when you're working hard or trying to focus, a lot of people eat or drink things. So throughout school and into college, it was always really hard to be in those environments.

Adeel [11:30]: Yeah, studying in college or even lectures in college, people just bring whatever they want in.

Ellen [11:36]: I know.

Adeel [11:38]: And there's vending machines everywhere.

Ellen [11:40]: Yeah, I don't miss those days at all. It's tough.

Adeel [11:43]: And did it start to affect kind of the people you used to, kind of your friend circle, like the types of people you used to hang out with? Like did it start to, I'm curious how it affected your social life back then?

Ellen [11:55]: Yeah, for the most part, even though I was bothered during quiet times like test taking or in school, just by general people, for the most part, the main triggers in my life were still my parents and my brother. So You know, my friends, I don't know if it was like sort of like a honeymoon period or what it was, but for a long time they didn't really bother me much. And I was pretty open with them. So I would say like, you know, at that time I would make jokes about it. Like, you know, if somebody is eating a bag of chips, it's like, oh, I think they can hear you like a mile away and just try to, you know, make light of it. Yeah. And they just kind of knew like, all right, she's got that weird thing where like if we're eating around her, she's going to make a comment. So, you know. young people are fine with like turning on music, turning on TV. So I feel like that was for the most part fine. And then by the time I got to college, I just think it's a lot of like larger groups eating together for the most part. So it's just, I do, I actually do better in that environment. I know not everybody does, but if there's a lot of conversation going on and just more of like a general hum in the background, I'm able to eat with people, which I am pretty fortunate to be able to do that. Cause I know some people can't even be around others eating or see them. Right. I think it got, it got better.

Adeel [13:11]: Around that time, did you have any visual triggers?

Ellen [13:15]: I don't think I did. And I think it's something I've developed. So there definitely were times I remember, you know, having my headphones on being on like public transportation or something and seeing somebody, you know, across the way, you know, chewing gum or doing something that I felt if I could hear it, it would be awful. So just sort of doing that, like, we now joke and say it's like a death stare. And it really, I realize sometimes I'm just absolutely glaring at someone's affection. And I think that is the visual trigger, um, sort of getting to me, but it took a long time until that showed up.

Adeel [13:47]: Yeah. I, I, I do have them and it's just, uh, yeah, I don't remember having those back back then. I feel like it's the brain kind of, uh, warning you that, um, yeah.

Ellen [13:56]: I think it's so, I just think it's so fascinating to talk to, you know, some of the different people, um, we talked to at the conference and now I've done a couple of group chats and just how similar a lot of the stories really are with, um, you know, obviously everyone has their own version of it, but how things start and then how different triggers develop and things that show up. And it's, it's just so strange to me.

Adeel [14:17]: Yeah. Yeah. Okay. So you're, so yeah, being in a big group helped out in college. And so somehow you, you can, you made it out of college, obviously. Yeah. Or did you not? I don't know.

Ellen [14:28]: I did. I did.

Adeel [14:29]: Okay.

Ellen [14:30]: I made it.

Adeel [14:31]: If you didn't, I could have, I would have cut this out anyway, but it's good. You did make it like we all persevere somehow. We all, we all kind of bruised and battered. Yeah. So you're out in the real world. So then what's going on? Did you get your own place, get a job right away? Yeah.

Ellen [14:49]: So after college, I actually went to grad school. So I went to grad school for school psychology, finished that up. And long story short, I worked in the schools for a few years. But that was a very high stress environment, which I think was really tough with the misophonia and a lot of working directly next to people in lunch settings and all these things. I detoured from that, but I did enjoy my grad school years. It was almost just like another version of college where it was a lot of larger meals and I was able to live on my own and all these things that make living pretty easy.

Adeel [15:23]: Was the choice of school psychology, if you think it was affected at all by kind of an interest in your condition or was it coincidence?

Ellen [15:31]: I think it absolutely had to be, but I don't think I ever admitted that to myself. But I always wanted, yeah, I always wanted to help kids. Um, yeah, I think.

Adeel [15:41]: Did you see a lot of kids that were having other like, um, issues when, when you, as you were growing up, other kind of ADHD or mental health issues?

Ellen [15:51]: Honestly, not a ton of it. I just don't think it was really talked about. I don't think it's really talked about. I mean, the big thing, it's like crazy to think back about it, but when I was growing up, I remember there were like two support groups in my school and one was a grief counseling for people who have lost someone close to them and their family. And then there was like a divorce group. And that was it. Like you'd either have that or the other and there'd be no other issues, which is very strange to think about, but it was just, I don't know. I think it was sort of, unfortunately, this mentality of, um, just sort of push through things.

Adeel [16:21]: We'll learn, we'll teach you how to get over stuff or, or, you know, if you just, if you just work hard, you'll get over it.

Ellen [16:28]: Right. Exactly. Yeah.

Adeel [16:30]: If you put your mind to it, then we'll fix your mind. Exactly. Okay. Yeah. I'm just curious if, uh, I was curious, yeah, if this had, what had kind of like influenced your choice to go into psychology, but I was also going to, I was also going to be curious if you had seen a lot of people who had issues, what accommodations they might've had that, that, you know, would it be nice if, if, if you'd also gotten, but it sounds like, yeah, it sounds like there wasn't a ton that was talked about, but you were still inspired to, to try to help kids with psychological issues. So, so there, so you were briefly in a school environment, obviously, um, kind of a, um, kind of a war zone for misophonia.

Ellen [17:09]: Yeah. Um, a lot of like lunch meetings and it was around that time that I believe in New York, I think it was the New York times article that came out that sort of like, you know, really got the label out there of misophonia.

Adeel [17:22]: Yeah.

Ellen [17:23]: I think I have a link to that somewhere on the site or something, but yeah, I was actually looking back in my email before we, um, started chatting. Cause I, I knew there was a time. So I started dating my husband, um, at the end of college. And when I was in grad school is when I figured out the name of this. So I was looking back at old emails because I remember we would send things back and forth about it. And in 2011, I sent him an article and I said, you know, I found this audiologist. I'm really excited. I'm going to go see what's going on with that. So I think it was around then that I figured out what the terminology was. you know, found the email that I wrote to the audiologist and I was sort of explaining what my symptoms were and how long I've had it. And I said like, you know, please let me know if you think I might be a candidate for just an exam. And she wrote back and said like, absolutely. Based on what I was saying. That was really, really cool. So then that was people.

Adeel [18:16]: Yes. That was in, in Jersey.

Ellen [18:19]: Yeah. So that was really strange because I found, I don't know what the time, if it was the last place I would expect.

Adeel [18:25]: Yeah.

Ellen [18:25]: It was really weird. It gets weirder actually. So the, I think it was through the Metaphonia Association. It was, they had a link for providers and they listed, it was listing like even wasn't so far as like the UK and then somewhere in Canada. And then in the US it listed, I think like four providers. It was strange. And one of them was, it said the Northeast and it broke it down. And the audiologist was in the small town I live in in New Jersey, which was the weirdest thing ever. I was like, this is crazy. I thought I might have to drive like six hours or whatever.

Adeel [18:55]: Right.

Ellen [18:56]: I ended up going to her, which was a neat experience. Cause I got to hear about some of the research she was doing, but she was pretty late in her career. So she only ended up working with me for about a year. So, you know, I got basically like a report explaining that I have misophonia. Um, and we tried a couple of things, but even though like the treatment didn't continue on and I didn't get to do much follow-up with her, it was still definitely like the beginning of the journey.

Adeel [19:23]: Yeah. Somebody took you seriously. And, or like a doctor's note-ish kind of thing, or?

Ellen [19:30]: So basically I think what it was, was that because I, I think the exam was over, it was basically like a, a typical hearing exam and then a questionnaire. Uh, and then they were trying to decide if I should get fitted for like sound generators, the kind that, you know, a lot of people, yeah, exactly. Like they look like a hearing aid, but they put out sound. Um, so I did end up getting them and I think, I think the report was written so that I could attempt to get reimbursed with insurance, which didn't end up happening. But, um, it was a pretty like basic report thing, you know, like misophonia is a relatively like newly researched disorder and this is what we know about it and kind of pointing to some different information. But I did wear the sound generators for a while. And back then it was sort of like what they were doing for tinnitus, which was that they believe that if, if you play this sound a certain number of hours a day, that it would like increase your threshold for noise.

Adeel [20:33]: Okay.

Ellen [20:33]: So it was supposed to actually be a treatment. So it wasn't supposed to be like a coping mechanism. So I would try that. But basically what I was doing was I realized like if I turned it up louder, I couldn't hear the sounds that were bothering me. So I think I sort of abused the whole system and ended up. Yeah.

Adeel [20:46]: No, you were experimenting. You were experimenting. We now know that that unfortunately does not.

Ellen [20:56]: does not work as a, as a treatment, but it's an awesome option to have, you know, sounds in your ears, you know, hearing those other things.

Adeel [21:03]: Do you still use something like that or do you have them around?

Ellen [21:06]: I do. So I have them, I still have them. I really rarely use them because I find that if I have them on like a little bit, then I'm still kind of focusing on the noises that are triggering me, triggering me. And if I turn them up too loud, then I can't hear conversation. So sort of felt like I was using it as a crutch and I, I don't know. I think it works wonders for some people. It just hasn't been great for me.

Adeel [21:30]: Yeah. I mean, yeah. Forever people not wanting to use it all the time and just kind of getting used to the sound. And then if it's not there, then you might freak out or, or just at least having him or having him around, having something, having a, a treatment around can just help even when you don't have him on, just knowing that it's there. Yeah. It helps diffuse the fight or flight kind of.

Ellen [21:54]: Exactly.

Adeel [21:54]: Yeah. It's,

Ellen [21:55]: There's definitely a big psychological component there. I think we were talking about that at the conference with a couple other people that just knowing that you have, you know, a set of headphones on you is incredible or like a earplugs. Like my husband and I were going somewhere a couple months ago. We're going on a trip and like we're getting in the car and he's like, how did you? So we call the sound generators. We just ended up calling them ears, which is easy. Did you bring your ears and batteries?

Adeel [22:23]: Yes.

Ellen [22:24]: Yeah, I have those. I also have earplugs. I also have my sound canceling headphones. I have my AirPods. All right. Okay. You're set. Always prepared.

Adeel [22:32]: You're like me. Multiple form factors, you know, batteries or no batteries.

Ellen [22:39]: Oh, yeah.

Adeel [22:39]: So, yeah, maybe let's talk about your Mr. Right here. Yeah. So, okay, you met him in college. I did. You don't know it had a name yet until later, I guess.

Ellen [22:54]: I did not. But I certainly knew certain things bothered me.

Adeel [22:57]: So I'm picturing you guys bump into each other, fall in love madly. How long did it take for him to start pissing you off?

Ellen [23:06]: Start pissing me off. It's so weird how that works. Yeah, honestly, I think a fairly long time because, you know, it's just that phase. It's wild. It took a very long time. And I think, you know, as you get more comfortable with each other and you realize, like, all right, this guy's not going to, like, run for the hills if I say that him chewing bothers me, then that's when noises start popping up and things happening. But I'm very lucky. He's, like, a very polite eater. He's very, very supportive of misophonia. So it's been great. And I've always sort of emphasized that I don't want anyone who knows about it to really change much of what they're doing because I just feel a lot of guilt with that. And I think even though there are some simple things people can do to make my life easier, it's still my issue. So I really try to... come up with other ways that don't involve like him you know not eating his favorite food although we do have some things that we just avoid buying which I really appreciate so you know we play music and you know sometimes we'll have the TV on and different things but I think a big thing for us is like how he copes with things and how I always have is just like absolutely humor and just trying to notice the absurdity of different things and you know sometimes it gets so ridiculous you just have to laugh about it so that's definitely been helpful.

Adeel [24:33]: Yes, I like to use humor as a way to douse these kinds of things too. You have to. Yeah, sometimes it's the only productive way to do it.

Ellen [24:42]: Yeah.

Adeel [24:43]: Okay, so all you do is eat hard-boiled eggs or something.

Ellen [24:46]: I was going to say, it's funny you said that. We went to a wedding this summer and I haven't gotten to follow up with a couple yet, but we're seeing them next week when we head up to Boston. So during the wedding vows, The groom said to the bride that he, like, vowed to help her, like, open her dream restaurant where they'd only have mushy food. So, you know, my husband and I just, like, immediately looked at each other like, oh, my God, she must have me spun. I need to find out about it. But people often say, like, oh, yeah, if there was a place with all mushy food. But I don't know if I'm a fan of that either because mushy foods have plenty of noises. So, you know, hard-boiled eggs, I'd still, unfortunately, I'd still find problems.

Adeel [25:29]: Yeah, I didn't want to trigger anybody, but I was going to say, we'll see how it sounds when I do the editing, but I was going to say, yeah, hard-boiled eggs, like if they're, they, you know, a few minutes, they don't sound like anything when you bite through them, but later on.

Ellen [25:45]: the leftovers can cause problems. I know, it's such a shame. There's no perfect.

Adeel [25:51]: Is there anything else that he does that's absolutely maddening that wants you to strangle your husband?

Ellen [25:58]: I know he's very respectful. Typing on his laptop drives me nuts.

Adeel [26:02]: I really hate that.

Ellen [26:03]: He tries to use his laptop upstairs And he still says, like, I cannot. Yeah, exactly. I cannot believe you can hear that. This is unbelievable. But, like, we'll be out and I'll hear something and say, like, oh, yeah, I love the song. What are you talking about? And I've noticed that my whole life. It's just, you know, we focus on these things we're not supposed to be focusing on. It's these noises. And unfortunately, yeah, so laptop I hear all over the house. He doesn't use it all that much, luckily, at home. Yeah, plenty of other weird things. It's not all food.

Adeel [26:45]: Okay. But yeah, so it's not a, not a, yeah, so it's, it's a few, few triggers, but it seems like you guys have found, yeah, found somewhere to just.

Ellen [26:53]: We figured things out.

Adeel [26:54]: Yeah.

Ellen [26:54]: And sometimes, you know, sometimes he forgets things and that's totally understandable. And sometimes I'm able to laugh it off. Sometimes I'm not.

Adeel [27:01]: Yeah. So those days he sleeps in the garage, but, uh, but otherwise it seems pretty fun. And then at work, what's going on there?

Ellen [27:09]: Um, well, so for me, I get to be, Oh, you're working at home.

Adeel [27:11]: Of course. Yeah.

Ellen [27:12]: But I do sometimes, I do sometimes go in and what I've actually noticed is that I, I sometimes wonder if I'd like deconditioned myself to be able to handle certain noises because I was in there just the other day and I have like this small place that I can go by myself, but I had my door open. It was fairly warm and somebody in the room next door was typing, uh, And I had to shut my door and then I could hear it through the wall. It was wild because it's not like an everyday thing where I'm exposed to this. But still, I couldn't get the work done. Then I ended up putting on white noise and, you know, I got through it. But it's amazing that you're not.

Adeel [27:47]: Yeah, it's great that you have a room to go into. It's not a complete open office. Oh, I'm so lucky.

Ellen [27:51]: Some of the stories that, you know, I see on different like micophonia blogs and posts and, you know, some of the Facebook groups. Some of the work situations are, like, torturous. And, you know, some people, luckily, have had great experiences talking to their bosses, and some are just, like, basically told to suck it up.

Adeel [28:08]: Yep, or get out of here.

Ellen [28:10]: Yeah, exactly. So, yeah, I consider myself very lucky.

Adeel [28:14]: So, you know, all of your family members and people that you live with know what... So, do you tell strangers now? Do you tell other people at all?

Ellen [28:27]: Yeah. So I've never, I've never told a stranger. So I've, I sort of feel like even if I'm annoyed in public, you know, I'm not going to be around that person enough that they need to know anything. And I also feel like it's really none of my business to tell someone that they're bothering me in public, but that's just how I function. I'm kind of non-confrontational and probably could stick up for myself more, but.

Adeel [28:47]: We've all, I mean, we're all, we're very good at bottling stuff up. All of us. Exactly.

Ellen [28:53]: I know. Sad, but true.

Adeel [28:56]: So yeah, strangers, I don't know why I asked strangers, but friends, yeah.

Ellen [28:59]: So like new friends, very recently. I think I was saying recently that, you know, the conference we went to a few weeks ago, that was my second conference. And last year and this year when I got home, I just sort of felt like, you know, you just have all this confidence about it and you're like, all right, you know, this isn't something I chose to have. And there's all this research about, you know, it's a neurological disorder and all these things. you know, there's science behind it and all these things. I sort of start to feel like I have the right to explain it to people and, and see what happens. So I tried with a friend who's, you know, a newer friend in the last year or so, and she was going to bring her dog over. I have a dog and they were going to play and she was going to come in at 8am and she said, I'll bring bagels and coffee, which is the loveliest offer. But I started thinking in my head, like, how am I going to get out of this? So, um, I ended up texting her and I said, I'm going to explain this tomorrow, but please don't bring any food. And you can laugh about it now. I will explain this to you. And she said, I can't wait to hear that. Had you seen her eat before or was it, or was it just, no, no, I just knew like, and what I ended up explaining, so I ended up explaining misophonia to her when she came over that morning. She's, she's an awesome person and I knew she was going to be really interested in it and very like genuinely open to hearing my experience instead of judging it. So I was very comfortable with that. And I, So I was explaining misophonia to her. And then I said, you know, I could have gotten through us eating bagels together, but I just knew I wasn't really going to be present. Cause that's what happens is like, you know, if there's not a lot of noise going on in the background and I'm one-on-one with somebody and we're eating, I just ended up focusing on all the wrong things. And then I just sort of feel like they probably noticed that I'm off and like, why not just.