Cris - Advocating Misophonia Awareness in Workplaces

Adeel [0:01]: Hello, this is the Misophonia podcast, episode 11. My name is Adeel Ahmad, and I have Misophonia. This week, I'm excited to bring a conversation I had with Chris, who's the founder of SoQuiet.org. SoQuiet is a nonprofit with the mission of spreading awareness and education about Misophonia. If you follow us on Instagram at Misophonia podcast. you'll see some of the Misophonia information cards that they send out for free. These are business card-sized little cards with information about Misophonia that you can hand out to people to let them know what this is all about. Again, they're free. You can go to soquiet.org and request some be mailed to you. Chris is also, on top of all the recent research, so we talked about that a little bit, about how to find research yourself, ADA issues, and workplace accommodations, and a whole bunch of other coping mechanisms he's picked up along the way. He's had MISO since the early 80s, and he has a lot of great insight. As always, make sure to leave a review on Apple. I realized you don't even need to write anything. You can just hit the number of stars and go. Right now, sit back and enjoy this conversation with Chris. Chris, welcome to the podcast. It's good to have you here.

Cris [1:14]: Thank you for having me. It's a delight to be here.

Adeel [1:16]: Yeah, so we connected because I think you emailed me from hearing about the podcast on Reddit and reached out. And yeah, you pointed out that you are, we can get into each of these in detail in a little bit, but you have a nonprofit called SoQuiet.org. And you've got a great Medium post that I thought was just summed up. Living with Misophonia really, really well from a couple of years ago. I can't believe I hadn't read it or maybe I had. And you have quite a few claps, quote unquote, on Medium. So, yeah, do you want to... Gosh. Why don't you first tell me actually where you are.

Cris [1:59]: I'm in St. Louis, Missouri. I was in Denver where a lot of misophonia things have been happening recently. But I moved there very recently to the St. Louis area. So I'm in Missouri by the Mississippi River.

Adeel [2:13]: Tell me about the blog post.

Cris [2:16]: What inspired you to write that blog post a few years ago? Pure frustration, actually, is what inspired me to write. I have a couple of Medium posts up, and I actually am working on two more. It's a great platform with some credibility. But the first post I put up, gosh, probably going on two years ago, is called The Deeply Isolating Life of a Misophone. And... I just wanted a place for myself to quantify what the daily life of having misophonia is like. It's incredibly frustrating every day, which is not to give, we'll get more into the hopeful part later, but I was trying to explain to people just how altering. It can be an isolating. It can be, as we know, the chief coping mechanism that misophones have is avoidance. And so your social life, your professional life, everything takes a hit because you avoid what would normally be pretty healthy activities, going to see a movie or riding the bus somewhere or going for coffee or And I wanted it to just be an explanation of, from my experience, what it's like to have mesophonia. And then the second half of that post is just an outline of how people cope with it. There's no cure. There's no known treatment yet. But there are things that people can do to manage. And that's kind of what that post is about.

Adeel [3:49]: Yeah, no, I thought it was really great. It wasn't like a click-baity kind of thing. I hope not. Yeah, it was just from a misophone to other misophones, maybe to the greater society at large as well. But there hasn't really been enough misophone to misophone communication. I think we need to fix that a little bit and let everyone know that we're out there and we're kind of dealing with the same frustrations.

Cris [4:18]: And that was the initiating point behind the organization, which is fairly new. We haven't even been around a year and we're going to be expanding our website and our resources a lot in the coming months. I'm finding, you know, it's been considered a rare disease or a rare disorder. My own personal experience is that as I tell people about it and advocate for myself, it's more widespread than we think it is. There's just a lot of people who, A, don't know that it's considered a disorder, B, that it has a name, and C, that there is a community of people researching it. helping other people with it, cope, so on and so forth. So it's a whole new world for people when they discover that, oh, this weird thing that I have that drives me crazy isn't just me being eccentric or something wrong with my ability to live a life.

Adeel [5:15]: Yeah, I think a lot of people think they're just extra sensitive to, quote unquote, bad manners and or society's version of bad manners. And so they just try to suppress it. And they think that, yeah, they don't realize that what we have is a whole other whole other thing.

Cris [5:33]: right and uh i'm pretty impressed with the way that especially young people i'm 45 but a lot of i see a lot of young people online in misophone communities being much more aware of it and seeking help i've had it since the early 80s that's i remember having the symptoms in fourth grade and just wondering why nobody else was experiencing those things so i would be in class somebody would be triggering me and I didn't understand why other people weren't as bothered by it as I was. And they could actually focus on the teacher or whatever. And, you know, it was at least 15 years after I started experiencing symptoms that there was any recognition by the professional community that it was a disorder. They were seeing the same symptoms that don't fall into any other mental health or neurological health disorder. And I decided to give it a name. And it was another five or six years after that, before I realized that it existed and it was recognized. So, you know, it's great that we're in this age of information where people can reach out, people can talk to other people with it and help. And there's a lot of research being done on it. You know, I've got on my desk here, four studies from the last year that I'm reading through and I try to stay on top of everything that's published in medical literature on what people are researching about it because it doesn't fall into any known categories. For about 10 years, it was generally assumed that it was a mental health thing, maybe related to OCD or related to ADHD or something. And they're finding, no, it's not that. It's more of a neurological thing. But then in the meantime, we have audiologists taking it under their wing to treat it. And they're finding, well, even though it's a sound trigger disorder, it's not really an audiological problem. What do we do with this? What is this thing? And so we're in a really fascinating time.

Adeel [7:45]: Yeah, that's a good point. I didn't think about it that way. Audiologists, it's traditionally been falling under their purview, but it's probably going to be reaching the limits of what they can do. Usually what they end up doing is prescribing, you know, those kind of, I call them reverse hearing aids. I don't know what you call them, but like they just pump more noise into your ears. And I mean, that's what I do. I don't pump noise. I just put my headphones on usually and have some music going on.

Cris [8:13]: Yeah, and I was prescribed those same things to try out by my audiologist in Denver, who was fantastic, by the way, but there was a limit to what she was able to provide. And audiologists, of course, have no expertise or ability, and they shouldn't to handle the psychological aspects of it, which are greater. It's very life-changing. It's incredibly stressful, and there's a feeling of hopelessness that a lot of people get that they can lead a normal life, which they can. but I completely have been there many times. And so, but I've had those exact things you're talking about. They're incredibly expensive. They look like hearing aids because that's what they are. And they don't really, for me, this is just my own cranky take on it. They don't really do anything but a set of Bluetooth speakers that wouldn't do. So, you know, those things are thousands of dollars and a simple set of noise canceling headphones that you can listen to rain sounds or whatever it is that you find soothing works just as well.

Adeel [9:09]: And it's more fashionable. Right, right, exactly. So, yeah, so you're reading some of the recent research that's happening. Do you want to sum up some of the stuff that you've been reading recently?

Cris [9:23]: Yeah, and I want to preface this by saying I am not a medical professional. I'm a theater guy who's just had this disorder, and I don't want to get as much information as up-to-date as I can on it. So, you know, your local library will be able to access, and on Google Scholar and a lot of these, you can access a lot of these studies.

Adeel [9:41]: That's how you're doing it, okay.

Cris [9:42]: Yeah, they're academic studies. Anybody can have access to them. And if you don't, your local library, especially your local university, the library will be able to get it. One of the things that I found is if you're into that kind of thing, if you like reading the academic medical literature, you can always, if there's a particular study that you want to read and you can't afford the paywall for whatever journal it's in, you can always email the author and they're happy to send it to you.

Adeel [10:06]: Yeah, I've done that for other industries.

Cris [10:08]: Yeah, you know what I'm talking about. But in general, a lot of them are summing up... current knowledge and just quantifying current knowledge. Obviously, there was a study that came out a couple of years ago that really gave credence to the neurological aspect of it. They did brain scans of people who don't have misophonia, people who do. and how they reacted to different stimuli. That was the Kumar study from, I think, 2017. Landmark. Yeah, landmark study. I have one that I just read. It's the Palumbo. They basically just duplicated that study to confirm the findings and had some... There's additional things that need to be studied. And I'm also, I don't mean to get academic right off the bat here, but I'm also looking at, this is Misophonia Review of Research Results and Theoretical Concepts, authored by Siepsak and Dragan. I don't think I'm pronouncing either of those correctly. But they're talking about how studying it is difficult because a lot of the studies intentionally leave out the concept of visual triggers, which most misophones I've met do have. So they're just testing the auditory part of it. And they also say that... Even though mesophonia is comorbid with other conditions, often there's not. And what I mean by that is that it's usually accompanied by something else like an ADHD or PTSD. There's no one of those psychological disorders that seems to stand out. So it's kind of just going over some of those points. But I highly encourage people, if they don't mind reading academic literature, to get some of these recent studies, print them out. It's great that it's being researched so heavily now.

Adeel [11:52]: Right. At least read the abstract. That should kind of give you a clue what's going on. And I also like to, I mean, maybe a little tangent, but I'd like to set up a Google alert for misophonia so I can kind of like see whatever's new stuff that's being posted online.

Cris [12:09]: Yeah. And I find it, I don't know if I'm the only one who has this reaction, but whenever there is... something new that comes out, especially if it comes out in a mainstream publication. Misophonia has been covered on NPR in the last year very heavily in one article, Reader's Digest, Psychology Today, and now here the BBC is covering it. I just get this weird validating feeling that is kind of overwhelming. I've lived with this alone for decades. And then now that it's getting so much interest from the medical community and from people at large society in general, it helps a lot. It's just, you know, it's a very relieving feeling.

Adeel [12:53]: Yeah. And that's exactly, that's honestly one of the reasons why I started this podcast. I've noticed there is a, there is a change in the air, so to speak. And in you know being at um you know this funny convention last year and the year before it's those little kind of hallway um lounge conversations which are the most valuable parts and it's it's it's just very kind of like a almost like a you almost don't even have to talk to the person because you you know you can understand them and there's like a kind of like a comfort and there's like a relief it's kind of surreal um And so I kind of wanted to kind of try and duplicate some of that energy here for everybody to hopefully listen to and realize that they're not alone. And yeah, thinking when you're going through a, at least for me, when I'm going through a trigger, just thinking about the other people that... i've met who have it or thinking about some articles or something that i've read just kind of like helps helps reduce that that fight or flight sensation which is basically what this is the brain making you think that you're about to die yeah or or you wish you were dead or you were someplace else i find it i think i mentioned this in my article but i find it helpful when

Cris [14:04]: The hard part is if you're being activated by a particular sound, you can't think or communicate it in a reasonable fashion. Most people I know of think of me as a pretty Zen guy, pretty low-key. But even in those moments, I feel like I'm going to speak out of anger if I'm going to confront somebody who's in a meeting with me clicking their pen or something. But having so much... knowledge and so many resources that basically have my back the support no this is something that i didn't choose and is a real thing helps me a lot i tell people if i even bring up misophonia sometimes i'll just tell people hey can you stop clicking your pen i find that really aggravating i don't even have to go into the long explanation of what the disorder is nine times out of ten they go oh gosh i didn't even realize i was doing that i'm sorry and they stop But, you know, if they do ask more, I tell them, just Google it. I'll write the word down. I have these free cards that I send out to people through So Quiet, which people are welcome to request them. They're free. But they're just business cards that explain what misophonia is and ask people to stop whatever they're doing. And I've handed those out before, and I tell people, Google this word. You'll find... Psychology Today and Mayo Clinic and WebMD and Wikipedia, they all have very good articles on it if you're in the least bit interested about this bizarre disorder that doesn't really fall under any other criteria that I deal with.

Adeel [15:38]: And doing that, do you hear back from people later on? Like, I don't know, maybe somebody looks it up and they realize, oh, I have it too. Or I know somebody who has it.

Cris [15:48]: Yeah, I've been very fortunate. I think a lot of people are scared to bring it up, which I understand. It's hard to be an advocate for yourself no matter what's going on with you. But a lot of times I'll send people a link to this article. And I try not to be too forward with it. It's only if I think they might be interested or could benefit from it. And I say, here's an article I wrote on Medium that... that you can read at your leisure. And it explains what I deal with on a daily basis in as clear terms as I can think of. And most people, they get it. If they're in any way curious, they go, oh, I had no idea this was a thing. And a lot of times when I bring it up, they either already have heard of it, which blows me away. I was at a picnic for, my girlfriend's a librarian, and so she had a going away party with some of her teens. She was a teen librarian. And when she said, hey, you know, Chris has this particular thing, they already knew what it was, which blows my mind. Do you know where they heard about it? I have no idea. Social media, I guess. Yeah, yeah. But I've brought it up with people, and a lot of times, recently, that person will say, oh, I didn't know you had that. And by the way, my friend also has that, or my aunt also has that. And so just the awareness, I guess, in a nutshell, is priceless to me.

Adeel [17:20]: yeah no it's going on it's it's it's it's getting more i mean i just heard uh i just heard an actor talk about i mentioned it by name on um on the late night with seth meyers a few nights ago um so i know sarah silverman talks openly about it so um maybe i did not know that it's part of it too yeah yeah you get basic google google shows sarah silverman uh misophonia you'll find a um

Cris [17:43]: I know Kelly Ripa on the... Yeah, that one gets mentioned a lot.

Adeel [17:48]: But Sarah actually, like, she seems like she, I mean, she's done some research and, like, she talks about it really, you know, like we do. So that's kind of interesting. So tell me more about, yeah, So Quiet. Is that, I know it's relatively new, but what kind of other activities do you guys do other than the information cards?

Cris [18:07]: Great question. Great idea. um there there's uh some pretty prominent misophonia nonprofits that have sprung up and they have fantastic information we're going to be focusing mainly on awareness and helping people cope so it's more of a misophone to misophone approach that we're taking so any kind of resources that we can provide to people to help them communicate what it is we want to do that So, and also just recognizing that it can be very isolating and it's tough to know how to speak up for yourself or to communicate with people. I'm on a couple of, I guess, apps, social apps, like the Amino app. I don't know if you've heard of that. It's kind of like a make whatever you want social app. I hate to compare it to Reddit, but it's where you can create your own communities i guess but there's one for misophonia on there and it's predominantly very young people so teens and young adults um on there just communicating their frustration that their family doesn't believe them or their you know brother intentionally triggers them and they're they're stuck in their bedroom and they can still hear them eating and they don't know what to do and they're panicking and i've been in those kind of situations oh yeah Just letting people know that there are ways of living a healthy, productive life. I've done it for decades. It's not easy, but you can get to a point. And you have to make some tough decisions in your life. Maybe you do need your own place. Or if you can't do that, maybe spending time at the library quiet room instead of going home and having to listen to a family member who is... I hate to use the word ignorantly, but ignorantly triggering you and doesn't want to stop. You know, those kind of situations are really tough. And just having somebody else to listen who understands what you're going through is important, too.

Adeel [20:13]: So do people usually reach out to you? Are you looking in these forums and whatnot to find people to connect with?

Cris [20:21]: I try to just encourage people outside of my misophonia. I'm also a recovering alcoholic, which is not what your thing is about, but I've been sober for over two and a half years. And it's a similar thing in that I want to support people and let them know that life can get better and that things can go really well. I've done it myself and I can tell you that it takes daily work, but you can get through this and there's things that you can do to make your life as comfortable as possible. And a lot of misophones don't realize that that they have resources that they maybe had not realized. For example, in the United States, you probably have listeners all over the world, I hope, or will soon. In the United States, we have the ADA, which is the Americans with Disabilities Act, and misophonia is considered a disability. There have been people, myself included, who have been successful in using the ADA and the reasonable accommodations that employers are federally required to provide. um to get some satisfaction and some comfort in their workplace so that might mean working from home there's a lot of jobs that you can do from home that might mean having your own space your own office the last place that i worked full time gave me they provided noise cancelling headphones and they instituted a no food and no gum policy in the office and that was all federal requirements and all i had to do was i didn't have to make a big stink about it i got a letter from my audiologist, and a letter from my therapist at the time, which I didn't actually have to provide either of those things, but that was just some additional credence to my request. And we have the law on our side, and you don't have to be an annoyance to other people to ask for a more comfortable work environment, those kind of things.

Adeel [22:17]: Yeah, that's great. Yeah, because that has been coming up, the issue has been coming up recently. And, you know, I know of at least one person who's laid off, but mainly due to not wanting to move into an open environment. So, you know, a lot of people are asking about things like that. So that's great to hear that you were successful doing that and did not necessarily need a letter from your doctor.

Cris [22:45]: No, it helps, I guess. That was just a little bit of backup data. But something else that I did, and by the way, again, I'm no lawyer, I'm an art guy, but I would imagine that if somebody was laid off because they didn't want to convert to this particular office plan, there are not many disability lawyers who wouldn't want to take that case.

Adeel [23:05]: Gotcha.

Cris [23:06]: Gotcha.

Adeel [23:06]: Yeah. Interesting. Okay. And yeah, so we were kind of related to that. We were talking a little earlier about how just in general, there seem to be more of a public awareness of sensory issues in general. And, you know, there are... There are grocery stores, libraries, theaters, museums, there are these sensory evenings or sensory events where they turn the lights down, they make things quieter, they don't collect all the shopping carts at the grocery store. Right. And a lot of these are not necessarily... maybe instigated or initially by misophonia, but these are, and it could be like autism, there's a bunch of other disorders. I think it's worth, I keep telling you, I think it's worth connecting with these other groups or at least kind of throwing our, you know, having a voice in these kinds of issues to make sure that organizations are doing that and also that we kind of let each other know that there are times that we can, that might be more comfortable for us when we go out

Cris [24:23]: Yeah, absolutely. Even though it might be a very different disorder if it kind of falls under what people perceive as sensory sensitivities, which there's a lot of them. There's tactile sensitivities and visual sensitivities. And I think partnering up with those kind of other groups for other disorders can only be helpful and and we can use their um efforts to our um to help us as well for example i i've gotten to where i don't watch many movies even though i love films because a lot of them have eating scenes in them i'm finding um and microphones are unfortunately getting better and closer yeah Listening to NPR is a task because of mouth noises. But I don't know if everybody else does this, but when I have gone to a movie theater to see a movie, like a Star Wars movie, which I don't think has much eating in it, they do have the assistive listening devices for people who are hearing impaired. But those will let you listen to the movie with wireless headphones pumping the audio into your ears, but it also blocks out the noises in them. the theater, the ambient noises in the theater. So you can use those. I've done that before.

Adeel [25:37]: Yeah, I've tried them once. It didn't really help me that much. Maybe it's just the system I had. I don't think I had the noise canceling aspect of it. Maybe it did. I don't know. Or maybe it just wasn't comfortable.

Cris [25:50]: They're a little awkward, but there's little things like that that exist that people can try and it might help them. I carry foam earplugs everywhere, you know, like anybody else. And believe it or not, it took me many, many years. It's only been in the last few years that I've even done that because I don't know why I didn't make the connection between, oh, I can just carry earplugs everywhere and I can at least drown out some of those quieter ambient noises that bug me, but I can still hear maybe somebody who's talking to me.

Adeel [26:19]: Yeah, I should try pure earplugs. I try to carry headphones around just because I need something pumping stuff into my ears too. But yeah, I should try to just bring some phone plugs around.

Cris [26:34]: But there's a lot of little things that... Maybe people figure out on their own. Box fans, bathroom fans, kitchen fans, they all have them. And just turning those on all the time can help drown out some of that noise. So little things like that can actually go a long way to helping just in daily life.

Adeel [26:53]: So going back to, okay, so going back to your past, you did mention a little bit earlier that, you know, we had this since the early 80s, since I guess around the fourth grade. What was, so what was obviously like nobody, we mentioned nobody's talking about it back then. What was it like being in school, being in grade school in the early 80s with this condition?

Cris [27:18]: it was frustrating obviously now we recognize it as a condition and you know i it since it wasn't there was no awareness that anything like that even existed i i have a tough time pinpointing exactly when it started for me but it was i remember visual triggers in the fourth grade and so i'm kind of placing everything around that time and that's around the time that i stopped eating dinner at the dinner table with my family um and was so it was family that was the first trigger versus i think that's pretty much what most people experience um it tends to crop up some people it crops up very young but most people notice that around junior high or early high school from you know but yeah just anecdotally um and for me it was the same way it was family eating noises um and it was tough uh because i you know i was able to go to school through sheer will because i didn't i just thought oh i'm abnormally bothered by these things and i would suffer in silence and suffer in silence for a long time and had a very difficult time obviously concentrating so anything affected your school like your grades oh i know it did um it confounded my parents because I always did very well on standardized tests and like intelligence tests. And I'm not, that's not a humble brag. I'm just saying like, I'm not trying to show off or anything. I've got plenty of flaws, but, um, I always did very well on those, but my grades are always poor. Like I was a DC student and that just confused me. my parents and some of the therapists and teachers, they're like, I don't know why he is having such a tough time. And it was purely an inability to focus on a test or to focus on an assignment in class because the person next to me has a bag of chips and or they're shaking their foot or they're tapping their foot or clicking their pen and those things just overloaded my ability to focus.

Adeel [29:28]: So what did they say about the you know leaving a dinner table and what like how did you how did you go about doing that and was it did it raise any eyebrows and just kind of clue anybody in on something might be wrong?

Cris [29:39]: I feel like I was pretty fortunate. I think a lot of folks have more strict parents than I did. It's not that it was a complete free-for-all. And again, we're going on 35 years ago. This is a long time ago, and I was pretty young. So my recollection might be a little dramatic. But I don't remember it being... a huge issue that in and of itself. They were like, okay, well, you want to eat in your room for now and go ahead. Gotcha.

Adeel [30:11]: So they did not suspect any issue? You didn't mention anything that, oh, these sounds at school or, you know, your eating sounds are bothering them?

Cris [30:20]: I would mention it, but I didn't have the awareness to advocate for myself. I just thought, oh, these sounds just bother me. It's just me, yeah. And there's something weird about me. Or people are better at coping with those sounds than I am. And I don't know what it is. But...

Adeel [30:41]: Yeah, I think that's what everyone kind of sees it as, like a gradient versus what this, it's more like a step function where it's not just a gradient of I'm more annoyed than you. No, this is, my brain is thinking completely, is wired a completely different way.

Cris [30:59]: And that wasn't something that I really had the awareness to realize back then. Now I know a lot more about it, but it was just one of my weird, and I'm kind of being sarcastic, one of my weird eccentricities among others. I've always been kind of an artsy outcast kid anyway. So that was just one of the things that people like, oh, that's Chris. you know he doesn't like people chewing gum or whatever um and it's it wasn't on anybody's radar is anything you know this was even back before like adhd was even really diagnosed at all none of those kind of things were really fully concrete back then so as you were getting older you um you said you know you're getting uh you're getting older and are people as you're getting older noticing in different ways like your friends at school or people in theater or whatever you're ask that again. I'm sorry.

Adeel [31:54]: Oh, like as you're, as you're getting into, so you're, so we were, you know, we're starting out around fourth grade, junior high. So as you, as you're getting older, um, are people, you know, are more of your friends must be, I'm assuming are noticing that you're not hanging out or you're kind of, um, Oh, I see what you mean.

Cris [32:12]: Yeah.

Adeel [32:12]: You're probably getting a little bit more assertive. I'm assuming maybe not.

Cris [32:15]: Assertive is a good thing. And of course, if you've been in therapy, you know that assertive is different than aggressive. So I can definitely be assertive about it because I have the word to use and I have the knowledge behind it. None of that existed before. And people do understand, even if they don't necessarily understand the full breadth of misophonia, they understand that that kind of thing exists. And I can tell people, even strangers, you know, I was supposed to go to a trivia night with some co-workers of my girlfriend at the time. And she said, hey, can you guys not have like crunchy chips or popcorn or anything? And they were all like, yeah, no problem. but you know it was a it was a whole county-wide thing so every other table had the chips and the popcorn and i still couldn't even though i tried to attend that after about three three seconds i was like i can't stay here but people do understand it um by and large i'm sure there's a-holes out there who are just like oh that doesn't really that's not a real thing but maybe i'm just fortunate to have very understanding people in my circle of of uh acquaintances but People get it. They're like, I totally understand it. Just yesterday I was donating plasma, which that's a whole other story, but I was donating plasma. And one of the managers who worked there was walking up and down the line, clicking his pin very anxiously. And I just told him like, that's gonna drive me crazy. I'm gonna have to leave if you keep that up. Do you mind stopping? And he's like, oh yeah, yeah, sure, no problem. So that kind of thing is hugely important.

Adeel [33:50]: Right. Gotcha. Yeah. And like around going back to college, high school, how was it then? Were you still hiding it?

Cris [34:04]: Yeah, I was hiding it. You know, it definitely had an effect on me because it was very stressful. But... You know, looking back, I would just cope as best I could. I spent a lot of time doing this weird thing where I'd put my arm on the desk and then I'd press one ear against my arm to block out sound through that ear and then cover my head with the other arm to kind of block out the noise. And that's all I really knew to do. This whole world of speaking up for myself and wearing earplugs and all of the different things, none of that occurred to me. It was just I have to kind of... I need to be able to focus on the instructions, the lecture or whatever. And this other thing that is taking all of my attention away at the back of the room, I just have to try to block it as best as I can. And a lot of people I know of aren't able to go to school. You know, they want to go to college, but they can't because their music phony is so assertive. And that's sad. But I think we're at a point where They can go to the dean or they can go to their professor or whatever and say, here's what I've got. I would really appreciate it if you could institute some kind of like no food policy during the courses that I'm in, please. And a lot of the times people go, you know what? I get it. You're right. We'll do that.

Adeel [35:30]: Yeah, and so now you're in the theater now. Are you an actor?

Cris [35:39]: No, I'm not a good actor. My background's in theater. I have an MFA in directing, even though I've done a lot of work in the tech industry since getting my MFA. But, you know, I'm now middle-aged, and I found that... The office life, even if I do have accommodations, can be very frustrating. When I worked at Apple, I don't know if I can say that I worked at Apple, but when I was on the phones doing tech support, I was working from home, which was nice, but some people would call up and they would need some troubleshooting on their phone while they're crunching ice or something. That became very frustrating. Did you leave because of that? To a large degree, among other things. But, you know, I tried just, I needed a stopgap job a couple of years ago and I decided to work at a cafe and it drove me crazy. You know, they serve chips and I was like, I just, even though I went, oh yeah, even though I went to the management and said, hey, can I do something in the back or whatever, I had to quit that job. And there's a lot of, setbacks, what seem like setbacks, when you have misophonia, it can be very frustrating, especially relationships. I was speaking with my therapist yesterday, and if you've seen, you've probably seen the documentary, The Quiet Place. Yeah, I have that. Great. Yeah, it's great, and I've actually been able to meet a couple of people who are in it, but It's really difficult to maintain relationships, either friendships or romantic relationships, because it requires a lot of the other person as far as understanding it. I just know it's tough. From a big picture, it's very tough. I don't know. Maybe I overly... What's the word I'm thinking of? Not dramatize, but catastrophize things. But there's been a lot of times when I've gotten really depressed and I get this feeling like... because of all these things that I have to deal with every day, standing up for myself and communicating to people and what feels like imposing on other people so that I can be more comfortable, it can feel very defeating. Like you feel like... Am I really ever going to get by in the world okay? And of course you can. I've done it for decades. But it's easy to go to a dark place, I think. And I really worry for people, especially young people, who find themselves in that hole. And I completely understand it.

Adeel [38:24]: Yeah, when you don't know what it is. And a condition like this where it seems like most people sweep it under the rug as some kind of annoyance, but you know it's not. Right. And you just don't know how to express it.

Cris [38:40]: Yeah, and I feel really bad for people who have... family or employers or friends who just they don't understand it they do think of it as oh you just find that annoying and and either intentionally trigger you to tease you which is just cruel god or um disbelieve when You know, in this day and age, you just have to Google misophonia and you'll find highly credible professional sources that validate it's a real disorder. It has diagnostic criteria. People are, you know, criteria. People are researching it thoroughly. They want to know more about it. But that kind of thing sounds like it would be very defeating and you would build up thicker walls around yourself because people don't hear you.

Adeel [39:26]: Have you talked to your family about it, you know, recently? Like, you know, obviously since your childhood, how do they, what do they think?

Cris [39:34]: Yeah, I do. They're very understanding. I'm fortunate to have parents who even before we knew it was a thing were, didn't criticize me for not wanting to eat dinner at the table or, you know, those kinds of things that I really couldn't put words to, but then I would, you know, I would avoid those situations. But, no, they get it. And when we look back... Do you have siblings, too? I have an older brother, yeah.

Adeel [40:04]: And he wasn't doing anything cruel, or maybe he was?

Cris [40:07]: Not intentionally. Okay. No, although he did... I remember him being a trigger. And, again, I didn't know what to call it at the time. I just knew that... He woke up earlier in the morning than me and him getting a bowl of cereal bugged the hell out of me. And I remember that. But he never did it intentionally that I can recall. But no, I've talked to my parents about it. They know about the organization and they know that it's a thing now. It's a real thing. And when we look back, you know, Steve Jobs in his Stanford commencement speech that's so famous said, you know, you can always connect the dots looking backwards. You can never connect them looking forwards. And looking back on my school, my performance in school, my frustration, my. depression and my what they viewed as introversion it was avoidance was all tied to this constantly being distracted and frustrated by the world around me and You know, we're learning more about it. We still have a long way to go. But I'm so fortunate to be at this point in the world where we have a word for it and we can describe it in terms, whereas before it was just a deep discomfort, you know, that I couldn't put words to.

Adeel [41:43]: Yeah. Yeah, no, I totally agree. There's something, like I said, there's something changing in the air. And I'm glad for the younger folks who are reading about it on Google. Also at the convention, there was like a family track just for families. And a lot of parents came with their kids and brought their kids.

Cris [42:05]: Wow.

Adeel [42:06]: And so there was a whole kind of program for them, which I think is very, makes me very optimistic for the future. Yeah, absolutely. Imagine that, you know, having happened like, you know, 30, 40 years ago. So it's great to see that because I think, you know, you could have a, you know, you could be Somebody with a lot of potential could be completely defeated in school. And just knowing about this and getting, I think, you know, as we know, not onerous or complicated remedies could really change a life.

Cris [42:43]: Yeah. And it's, it is one of those things that it's a disability and, but it, based on the research that I've read, that's still preliminary, but making headway there aren't really any other, it's not comorbid with any other cognitive disabilities or anything. It's just a hindrance. So you have people who are highly intelligent and ambitious and creative and could change the world, you know, in their own way, whatever, their thing is, and this is just a barrier or a hurdle that they are always going to have along the way. But it did for me. I try to stay busy, and I'm fortunate in that I can do a lot of my things that I enjoy as creative outlets professionally.

Adeel [43:31]: Yeah, so what are you doing these days professionally, I guess? Just curious, like, day-to-day, professionally, but also, like, hobby-wise, like, what's your life like these days other than the nonprofit?

Cris [43:46]: That's a great question. You know, with misophonia, you have to really be aware of what you'll be able to do professionally. So even though I enjoy the work of working in restaurants, like, I don't mind washing dishes, I don't mind prepping food, I can't work in that environment anymore, even though I've tried in the past. So what I do now is... I have been working more in the theater, which does allow me some, for lack of a better term, control. You know, I was technical directing, which basically just means, you know, helping get the set built and all of that. A Shakespeare production last month.

Adeel [44:25]: Ooh, which production?

Cris [44:27]: It was Merchant of Venice.

Adeel [44:28]: Okay, yeah. I just saw a production of Macbeth a couple weeks ago.

Cris [44:32]: Oh, that's a good one. But in those kind of capacities, if it ever comes up, I feel like I have a lot more leeway to say, hey, while we're working in the scene shop, can you not crunch those chips or take those outside or something? And the rest of the time, the work I do is at home. I do freelance writing, freelance design work. And those are...

Adeel [44:56]: those afford me um i guess luxury of not having to really encounter triggers too much so um let's talk about i guess we should um yeah we should uh start to wrap up soon but i'm sure what um what what are your plans for let's so quiet and kind of what are your maybe your goals for misophonia awareness um and and coping for the next year or two That's an excellent question.

Cris [45:25]: For So Quiet, we're going to be expanding it quite a bit because of the move. I moved from Denver to St. Louis. There's been a little bit of a hiatus on things going up on the site. But before the end of the year, in the next month or so, I'll be adding more blog posts just about specific things that are, again, typically misophone to misophone. That's our goal, helping people advocate for themselves to educate. those around them and to know that they have resources to do that and that they have the authority to do that. So things like I'll be writing an article on the ADA and asking your employer or finding an employer, first of all, asking your employer to help you out to do a better job, to be a more happy worker. But one of the things I want to do with So Quiet as well is I'll be happy to talk to companies and organizations, especially their HR department or their managers or their higher ups. I'll do it for free just to explain to them. what Misophonia is, why it's important, not just to their employers who maybe want to work from home, which, by the way, is it's a thing now, you know, it's it's preferred by a lot of people. I've done it before, but also to your customers. So I got I guess I get the idea when I go to a store, I'm doing some shopping and there's one line, one checkout line open and the checker is just smacking their gum. And I leave. I don't check out. Good for you. And I want to be able to go to them and tell them, I'm a customer. I'm not the only customer who has this, even though there may not be that many. It's important for you to know that this particular thing makes it so that I can't shop with you. Here's why it's important. So, yeah, that's exactly what I'm hoping to do. And I hadn't thought about it as a hiring. advantage or a feature of hey we also have this but could be you know I've even thought of having this would be quite an undertaking but to do movie reviews like if does this movie have eating scenes in it but a yelp review of that kind of thing does too i've even left yelp reviews for places that i expected them to have some sort of problem and they didn't i took a tour of the molly brown house from the titanic in uh in denver and i was afraid that you know that that kind of social thing where you're on a guided tour with other people from the public would be a problem for me but they said outright at the beginning of the tour there's no food or any gum allowed on this tour And I mentioned that in the review on Yelp. Along those lines, most of the libraries that I know of have a quiet route now. And that's for people who just want to study in quiet or have sensory sensitivities. There's also, again, I have never looked into these. I don't endorse them, but there's a couple of companies that make what they call Zen booths. And these are for offices. They're noise proof, for lack of a better term, like phone booth style booths where people can go and it's quiet or they have ambient noise. And, you know, why not have a quiet office for people in your business with just maybe some white noise or something that doesn't have clicky pens or doesn't allow talking or phone conversations. I think we're coming around to those kinds of things, but it's nice to see that, you know, there's a lot of people who just don't like those noises. They don't have misophonia. They just don't like being distracted by those things. And they're on board with us too.

Adeel [48:59]: Yeah. Right. And we should we should join in on that. But we should also, you know, try to be more confident in saying that, you know, we have there is a name to what we have. Yeah.

Cris [49:08]: Different than what it's it's a disability. It's no different than telling somebody, you know what, I'm lactose intolerant. Can you make some things for Thanksgiving that don't have cheese in them? You know, it's not any different than that. And I try to tell people. you know, if you were to tell somebody you had diabetes and they said, I don't believe you, that sounds ludicrous, right? Yeah, yeah. But that happens to people like us and it's happening less, I think, but it still does occur and it's disheartening. Right.

Adeel [49:34]: So, you know, just... Wrap it up. I can talk forever, as you can tell. I guess I kind of went on a tangent earlier when I was trying to ask you more about your plans for So Quiet and maybe we can just talk through a couple of those and then we can...

Cris [49:51]: Sure. We're in the process of getting it 501 certified. There's a hefty application fee to that. So that's in the works. It's registered as a nonprofit with our state. But we want to just make it so that there are resources uh that we can provide whether it's these cards these free misophonia cards that i'll send out to anybody i love that yeah um that you can hand out just to say hey i i don't you know maybe i can't speak for myself right now can you just read this and hand it to them um and somebody posted that on on reddit and we actually ran out of those cards so i have a fresh order coming in today we're planning on again we're a non-profit but we're planning on adding um You know, I have a T-shirt that I had custom made that says, please stop smacking your gum that I wear around. And it invites conversation. I don't know if anybody is, you know, not everybody is bold enough to wear something that's so kind of in your face as that. But those kinds of things. I want to do more book reviews. In the last couple of years, there's been... quite a few books that have come out about misophonia coping with it or talking to your family about it um so i've got three or four of those in the pipeline just just uh um i want it to be a resource for people um we're thinking about adding a chat so that if you want to chat with somebody about misophonia You can do that. And I would also like to offer this where I'm, for lack of a better term, a consultant for businesses on the workplace and taking care of your customers who aren't going to be coming to you saying, I have this problem. You have to assume that there's a certain percentage of people who have it and you're not going to know about it. And you're going to be deeply frustrating them by having smacky gum employees or whatever it happens to be.

Adeel [51:44]: You should definitely pursue that. I mean, it's going to start to affect if it has already the bottom line of people avoiding businesses because of that or businesses losing out on talent. So I think that's a great thing for you to move towards.

Cris [51:59]: There's a number of other things in the pipeline, but as a charity organization, I really want to be helping other misophones spread the word and help them know that they can advocate for themselves and educate their family and friends and society at large about it because it is unique. It's not really like any other disorder. There are other sensory sensitivities out there for sure. But we're finding that it might be its own unique class of disorder that we really didn't have an awareness of before. So there's a lot of interesting, wonderful new things coming out. And I'm looking forward to the future.

Adeel [52:44]: Well, that's great. Let's end it on that note, although we can probably go on forever. Yeah, I mean, yeah, I agree with everything you did. And good luck to you personally. And thanks so much.

Cris [53:00]: I really appreciate this opportunity. Yeah, I'll keep you up to date on what's going on. And, you know, I wish the best of luck to everybody who's listening. I'm sure a lot of people are misophones who listen to your web, your podcast website. I'm losing it. Your web zone. But, you know, I. It is like a lot of things. It's a family disorder. Your whole family has to kind of be on board with understanding it. And so I would imagine a lot of your listeners are coworkers, friends, loved ones, family members of people who have misophonia. And I think that's all great. I wish everybody the best of luck and keep reading, keep studying. More information is coming out on a monthly basis. And we'll just keep on keeping on. Hang in there.

Adeel [53:50]: Alright, I hope you enjoyed that chat with Chris. You can follow us on Facebook and Instagram at Misophonia Podcast. Also on Twitter at Misophonia Show. My email is hello at misophoniapodcast.com Still have lots of stickers I'm sending all over the world. So please email me your address and I'll send some. Theme music is by Moby. Until next week, wishing you peace and quiet.

Unknown Speaker [54:44]: Thank you.