WEBVTT - The Mysterious Misophonia 0:00:08.560 --> 0:00:11.400 This is the Anxiety Bites podcast and I am your host, 0:00:11.560 --> 0:00:20.320 Jen Kirkman. Miss Aphonia is the topic today on Anxiety Bites. 0:00:21.600 --> 0:00:26.680 A little disclaimer up front. My guest today is Dr 0:00:26.800 --> 0:00:30.520 Zachary Rosenthal, who is the director of the Duke Center 0:00:30.560 --> 0:00:36.720 for miss Aphonia and Emotion Regulation and CBRTP. Zach had 0:00:36.800 --> 0:00:39.599 asked me to do a little introduction where we just 0:00:40.640 --> 0:00:43.080 let you all know that he and I were very 0:00:43.120 --> 0:00:48.479 mindful as we spoke to try not to do anything 0:00:48.600 --> 0:00:51.839 that could trigger anyone with miss aphonia. So we do 0:00:51.960 --> 0:00:59.400 not have any slurping, ums, throat clearing. We've kept our 0:00:59.480 --> 0:01:03.520 verbal to hopefully down to nothing, but sometimes it's hard 0:01:03.520 --> 0:01:06.320 you don't know you're doing them, but hopefully it's very 0:01:06.400 --> 0:01:09.480 minimal to zero. And we just wanted to let anyone 0:01:10.160 --> 0:01:13.200 listening no who has miss aphonia, that we tried to 0:01:13.319 --> 0:01:17.240 be as mindful as possible and hopefully you will be 0:01:17.240 --> 0:01:18.759 able to listen to this episode and you will get 0:01:18.760 --> 0:01:21.440 a lot out of it for those who don't know 0:01:22.200 --> 0:01:25.440 what is miss aphonia. And this is taken from the 0:01:25.600 --> 0:01:29.400 Duke dot E d U website, where again my guest today, 0:01:29.600 --> 0:01:33.840 Dr Zachary Rosenthal, is a clinical psychologist and Associate professor 0:01:33.880 --> 0:01:36.720 with a joint appointment in the Department of Psychiatry and 0:01:36.760 --> 0:01:41.919 Behavioral Sciences and Department of Psychology and Neuroscience at Duke University. 0:01:41.959 --> 0:01:44.479 He is the director of the Center for miss Aphonia 0:01:45.319 --> 0:01:49.760 so miss Aphonia. According to their website, the word translates 0:01:49.800 --> 0:01:53.960 literally into hatred of sound, but this can be misleading 0:01:54.000 --> 0:01:57.720 because one anger is not the only emotion experienced in 0:01:57.800 --> 0:02:01.680 miss aphonia, and to some people will also have visual triggers. 0:02:01.720 --> 0:02:06.640 Without sound, there is heightened sensitivity and reactivity to particular 0:02:06.800 --> 0:02:12.720 meaningful triggers, resulting in aversive, physiological, arousal emotions and thoughts. 0:02:13.520 --> 0:02:16.560 Each individual may have his or her or their own 0:02:16.639 --> 0:02:20.880 unique trigger sounds, not formally recognized as a specific type 0:02:20.919 --> 0:02:27.200 of neurological, audiological, or psychiatric disorder. Some trigger sounds for 0:02:27.240 --> 0:02:32.480 the missophonic is chewing, slurping, sniffing, loud breathing, tapping, or clicking. 0:02:33.200 --> 0:02:36.480 Most often, it's the repetitive or patterned sounds that are 0:02:36.480 --> 0:02:40.799 difficult to avoid, commonly sounds that are made by other people, 0:02:40.880 --> 0:02:43.720 but some people do have a version to environmental non 0:02:43.800 --> 0:02:48.280 human noises like mechanical noises such as ticking, or clicking sounds. 0:02:49.760 --> 0:02:53.880 Mesophonic response is not usually caused by loudness of the trigger, 0:02:54.600 --> 0:02:58.799 and misophonic response may not be consistent across people or environments, 0:02:58.800 --> 0:03:04.480 and responses can vey ry over time. The mission of 0:03:04.760 --> 0:03:07.960 the newly launched Duke Center for miss Aphonia and Emotion 0:03:08.000 --> 0:03:11.720 Regulation is to become an international leader in the advancement 0:03:11.800 --> 0:03:15.560 of research, education, and clinical services for individuals with miss 0:03:15.560 --> 0:03:21.240 aphonia in difficulties regulating emotions. And so let's talk right 0:03:21.320 --> 0:03:25.280 now to my guest, Dr Zachary Rosenthal, and we'll find 0:03:25.280 --> 0:03:29.840 out why this topic is so personally important to him. 0:03:29.880 --> 0:03:32.800 I hope you learn a lot, and thanks again for 0:03:33.040 --> 0:03:41.440 listening to anxiety bites. So before we we're recording, Zach 0:03:41.560 --> 0:03:44.440 you were telling me some things to be sensitive about 0:03:44.640 --> 0:03:49.880 in terms of noises that I can make, not me particularly, 0:03:50.000 --> 0:03:53.920 but that anyone on a microphone could make that would 0:03:53.960 --> 0:03:57.360 be really disruptive to someone listening with miss aphonia. And 0:03:57.440 --> 0:03:59.880 of course it's all things that I would like to 0:04:00.000 --> 0:04:04.520 avoid doing anyway, because I just can't stand the sound 0:04:04.680 --> 0:04:07.040 of But I don't know how to say what we 0:04:07.040 --> 0:04:11.920 were talking about without triggering anyone. Yeah, absolutely so with 0:04:12.040 --> 0:04:18.640 ms aphonia it's really easy to unintentionally trigger somebody by 0:04:18.640 --> 0:04:20.960 saying or doing certain things that are kind of like 0:04:21.040 --> 0:04:25.000 vocal ticks. So Jen, what we talked about doing that 0:04:25.240 --> 0:04:30.039 is probably helpful for the audience is to have some 0:04:30.160 --> 0:04:34.599 awareness and some thoughtfulness about how we're talking. And we're 0:04:34.640 --> 0:04:37.880 just going to try to be careful and mindful with, 0:04:38.600 --> 0:04:41.400 you know, potentially doing things that could be triggering. So 0:04:41.440 --> 0:04:43.680 I've got my cup of coffee here with me as 0:04:43.720 --> 0:04:46.000 we're doing this, and I'm going to really be mindful 0:04:46.040 --> 0:04:50.480 to not slurp loudly, and I'll probably not even take 0:04:50.520 --> 0:04:52.880 a sip, and if I do, it'll be very quietly 0:04:52.880 --> 0:04:54.680 and thoughtfully. So things like that, we're gonna do what 0:04:54.680 --> 0:04:57.320 we can to try to minimize any disruptions or accidentally 0:04:57.320 --> 0:05:01.040 trigger anybody. And so, as you know, I don't know 0:05:01.080 --> 0:05:05.120 anything about miss aphonia, and I had someone right to 0:05:05.160 --> 0:05:08.280 me asking that I do an episode about it, and 0:05:08.320 --> 0:05:12.000 I was planning to anyway, I have to assume that 0:05:12.520 --> 0:05:15.960 much like O c D, where people who really don't 0:05:16.000 --> 0:05:18.320 have O c D say, oh, I washed my hands 0:05:18.320 --> 0:05:20.200 a lot, or I can't stop checking the log I'm 0:05:20.240 --> 0:05:22.080 sure plenty of people say I hate the sound of 0:05:22.120 --> 0:05:24.599 people chewing I mean I do. I I haven't been 0:05:24.600 --> 0:05:27.960 to a movie in the movie theaters in years. And 0:05:28.000 --> 0:05:30.320 this has nothing to do with COVID. I just don't 0:05:30.520 --> 0:05:37.480 like experiencing it with people's food sounds. So in that sense, 0:05:37.520 --> 0:05:42.839 how is this an actual thing? And it's not someone saying, yeah, 0:05:42.839 --> 0:05:46.120 I don't like when someone's chewing popcorn in the movies. 0:05:46.240 --> 0:05:49.400 What is this? What is the actual sure? What is 0:05:49.480 --> 0:05:52.320 ms aphonia? Yeah, you have a great way to start 0:05:52.360 --> 0:05:55.760 thinking about it. So a couple of things. One is 0:05:55.800 --> 0:06:02.880 that is a condition disorder that you can see in 0:06:02.960 --> 0:06:05.880 people if you're in the movie theater or on the airplane. 0:06:06.040 --> 0:06:08.200 These are the people who are giving you the evil 0:06:08.240 --> 0:06:13.320 look when you're popping gum or crunching on pretzels or chips, 0:06:14.160 --> 0:06:18.280 or repeatedly making certain noises or even making repeated movements. 0:06:19.800 --> 0:06:22.440 And the thing about people with miss aphonia is that 0:06:22.480 --> 0:06:25.960 they don't they don't want to be this way, right. 0:06:25.960 --> 0:06:29.599 This isn't something they're choosing. This isn't a person who's 0:06:30.040 --> 0:06:33.000 trying to be controlling or manipulative or or anything like 0:06:33.040 --> 0:06:35.719 this is this is a condition that they don't choose, 0:06:35.760 --> 0:06:39.400 and yet they have and it can be extremely debilitating 0:06:39.440 --> 0:06:43.280 and really dominate everyday lives. It's absolutely a miserable condition 0:06:43.320 --> 0:06:47.440 to have. Think about any other type of condition where 0:06:48.640 --> 0:06:52.279 you can have it on a spectrum of severity, right, 0:06:52.320 --> 0:06:56.200 So think about just use let's say anxiety, generalized anxiety. 0:06:56.400 --> 0:07:00.200 People have generalized anxiety disorder on kind of the hail 0:07:00.279 --> 0:07:03.400 end of the distribution of intensity of anxiety. Right, it's 0:07:03.440 --> 0:07:06.000 not just that they have every day anxiety, but it's 0:07:06.040 --> 0:07:10.080 really significant and it's really impairing them in some in 0:07:10.120 --> 0:07:14.600 some ways, socially, academically, occupationally, the anxiety is getting in 0:07:14.600 --> 0:07:17.680 the way of their life. Right, that's generalized anxiety. But 0:07:18.000 --> 0:07:20.080 you know, it's normal to have anxiety. We all have 0:07:20.160 --> 0:07:23.240 anxiety from time to time. So the same kind of 0:07:23.240 --> 0:07:26.560 thing is true with miss aphonia. It's normal to find 0:07:27.040 --> 0:07:30.160 certain noises annoying for all of us. Right. If I'm 0:07:30.200 --> 0:07:33.080 on I don't have missophonia personally, I'll share my story 0:07:33.120 --> 0:07:35.640 about how I got into this world in a little 0:07:35.640 --> 0:07:38.080 bit here. But I don't. I don't have miss aphonia, 0:07:39.520 --> 0:07:42.320 but I certainly get annoyed if I'm on an airplane 0:07:42.320 --> 0:07:45.240 with somebody and they're snorting up a storm next to me. There. 0:07:45.280 --> 0:07:49.960 You know, they're making these disgusting noises, or they're eating loudly, 0:07:50.080 --> 0:07:54.080 or you know, I don't like that, But that's not missophonia. 0:07:54.360 --> 0:07:58.520 That's sort of like, you know, people with anxiety can 0:07:58.560 --> 0:08:01.960 be anxious, but that doesn't mean they generalized anxiety disorder. Okay, 0:08:02.000 --> 0:08:04.280 So the long and short of it is this gender 0:08:04.320 --> 0:08:09.080 that the difference between a disorder and experiencing some of 0:08:09.120 --> 0:08:12.080 the phenomenon in the disorder is a matter of two things, 0:08:12.120 --> 0:08:18.160 one severity and two impairment. M It's not complicated, actually, Jen, 0:08:18.200 --> 0:08:21.120 It's kind of that simple, the really end of the 0:08:21.360 --> 0:08:25.360 spectrum of severity, where there's impairment in day to day 0:08:25.360 --> 0:08:29.840 functioning against socially, occupationally, academically, when somebody is impaired because 0:08:29.880 --> 0:08:33.319 of this, but they can't work, they can't work effectively 0:08:33.360 --> 0:08:37.960 around others, they can't they can't you know, share a 0:08:37.960 --> 0:08:41.400 dorm room with someone at college, they can't be in 0:08:41.440 --> 0:08:47.840 a classroom if without having significant intense nervous system arousal. Again, 0:08:47.880 --> 0:08:49.800 this isn't This isn't sort of just a thing somebody 0:08:49.840 --> 0:08:51.680 is thinking about. This is the thing in their body 0:08:52.000 --> 0:08:54.840 that's happening. It's very real, it's very nervous system. It's 0:08:54.920 --> 0:08:58.600 very brain. It's happening inside of their body, and it's uncontrollable, 0:08:58.600 --> 0:09:01.760 and it's unconscious as well. It's just a reaction to 0:09:01.920 --> 0:09:05.280 the stimula around them. And when it's so severe and 0:09:05.320 --> 0:09:08.880 it's so intense that it's disrupting their lives in a 0:09:08.920 --> 0:09:12.000 significant way, that's where we say, Okay, this is miss aphonia. 0:09:12.080 --> 0:09:15.439 This is not just being bothered. This is where there's 0:09:15.480 --> 0:09:18.560 impairment and the severity is high. And we would use 0:09:18.559 --> 0:09:22.280 the same argument for depression. People can be sad, they 0:09:22.280 --> 0:09:24.400 can be hopeless, but that doesn't mean they have major 0:09:24.440 --> 0:09:28.160 depressive disorder, right, They're just sad or hopeless from time 0:09:28.200 --> 0:09:30.240 to time. People can be anxious. That doesn't mean they 0:09:30.320 --> 0:09:33.240 have an anxiety disorder. It's the same thing. It's really 0:09:33.400 --> 0:09:36.640 it's actually not complicated in that way. Right. It's not 0:09:36.679 --> 0:09:39.440 an episode of Curb Your Enthusiasm where you know, Larry 0:09:39.520 --> 0:09:43.160 David type person who's bothered by everything is ranting and raving. 0:09:43.240 --> 0:09:44.520 You know, why do you have to eat your ice 0:09:44.559 --> 0:09:47.800 cream like that? It's it's like you said, it's in 0:09:47.840 --> 0:09:52.080 their body. It's not a thought. This is annoying. What 0:09:52.240 --> 0:09:55.120 does it feel like in someone's body. You know, for me, 0:09:55.800 --> 0:09:59.080 my qualifications in the anxiety world is I've had generalized 0:09:59.080 --> 0:10:04.240 anxiety disorder and panic disorder and various phobias, and it's 0:10:04.240 --> 0:10:07.720 fascinating to me when somebody has never had a panic attack, 0:10:07.800 --> 0:10:11.240 I just can't believe it. And so I'm like that 0:10:11.320 --> 0:10:14.400 with ms aphonia. So can you tell us what it 0:10:14.480 --> 0:10:19.880 might feel like in someone's body, from the smallest case, 0:10:19.960 --> 0:10:21.760 maybe all the way up to how intense it can 0:10:21.800 --> 0:10:26.559 really get. Yeah. The best way so far that I've 0:10:26.920 --> 0:10:29.960 found to explain this is through the words that a 0:10:30.000 --> 0:10:34.599 patient once shared with me, and what she said that 0:10:34.679 --> 0:10:36.880 I was asking about her experience, basically the same thing 0:10:36.920 --> 0:10:39.160 you just asked, but for her particular And she said, 0:10:39.200 --> 0:10:45.680 Dr Rosenthal, don't you understand, It's as though there's a 0:10:45.720 --> 0:10:49.680 grizzly bear standing next to me that suddenly appears that 0:10:49.800 --> 0:10:52.880 I can't control. And I look next to me and 0:10:52.920 --> 0:10:55.559 it's just standing there. And she looked at me and 0:10:55.640 --> 0:10:58.080 she said, how would you feel? How do you think 0:10:58.080 --> 0:11:01.320 your body would react what happened inside your brain and 0:11:01.320 --> 0:11:05.920 in your body if suddenly you turn the corner in 0:11:05.960 --> 0:11:08.240 the hallway and there's just a grizzly bear standing there, 0:11:08.559 --> 0:11:13.080 you would just have an automatic reaction of get out 0:11:13.080 --> 0:11:15.680 of there. So it's it's this real kind of it 0:11:15.720 --> 0:11:17.760 can be in an intense way. It can be a 0:11:17.880 --> 0:11:25.240 very strong reaction of danger of threat in the nervous system, 0:11:25.360 --> 0:11:27.320 so in the brain and throughout the body. We have 0:11:27.400 --> 0:11:33.520 all these really complicated, evolutionarily programmed systems that keep us alive, 0:11:33.559 --> 0:11:36.439 that keep us safe, to keep us surviving, and some 0:11:36.520 --> 0:11:39.680 of these systems seem to be triggered by people with 0:11:39.800 --> 0:11:44.080 ms aphonia when they experience these triggers. And the thing 0:11:44.160 --> 0:11:47.520 about triggers is they're they're not usually just a singular thing. 0:11:47.600 --> 0:11:51.080 It's not like, you know, somebody clears their throat once 0:11:51.120 --> 0:11:54.360 and now the person experiences a grizzly bear next to them. 0:11:54.360 --> 0:11:59.560 It's really more of a repetitive que that happens. Oh interesting, okay, right, 0:11:59.679 --> 0:12:01.680 So if I cleared my throat once on this podcast 0:12:01.720 --> 0:12:04.160 wouldn't be great. But if it was, like you said, 0:12:04.160 --> 0:12:06.080 a nervous chick, I'm doing it every two minutes, at 0:12:06.120 --> 0:12:08.839 a certain point, the anxiety builds for them. That's right, 0:12:08.880 --> 0:12:11.600 because their brain it's as though their brain is sensing 0:12:11.960 --> 0:12:15.760 that there's this thing that could happen that is highly unpleasant, 0:12:16.400 --> 0:12:18.640 and it's their brain. Is the parts of the brain 0:12:18.679 --> 0:12:22.080 that are being triggered are probably these very very kind 0:12:22.080 --> 0:12:26.520 of what we call bottom up so automatic automatic, unconscious 0:12:27.480 --> 0:12:30.000 parts of our brain that are triggered when there's something 0:12:30.000 --> 0:12:33.280 really unpleasant. And then there's also these topic what we 0:12:33.320 --> 0:12:35.360 call top down parts of the brain that are kind 0:12:35.360 --> 0:12:37.680 of the conscious regulation parts of our brain where we 0:12:37.760 --> 0:12:39.800 kind of like think about what could happen and we're 0:12:40.240 --> 0:12:42.920 worried about what might happen. So both of this bottom 0:12:43.000 --> 0:12:44.960 up and this top down thing might be happening with 0:12:45.000 --> 0:12:49.960 the person with miss aphonia where they're anticipating in some ways. 0:12:50.240 --> 0:12:53.199 In some ways this is not PTSD, but in some 0:12:53.240 --> 0:12:58.760 ways like PTSD, where there's an anticipation or what we 0:12:58.800 --> 0:13:04.559 would call hyper vigilance almost like a antenna coming out 0:13:04.559 --> 0:13:08.079 of the head that are sensing and scanning the room, 0:13:08.160 --> 0:13:12.840 the world around them, waiting, anticipating and not necessarily by choice, 0:13:12.840 --> 0:13:15.199 but it's just kind of this automatic thing that's happening. 0:13:15.800 --> 0:13:18.679 They're waiting to see will the trigger happen again. And 0:13:18.760 --> 0:13:23.840 this attention that gets really disruptively focused on potential triggers 0:13:24.720 --> 0:13:27.120 is part of what makes us stabilitating. I mean, imagine 0:13:27.120 --> 0:13:29.840 you're in a classroom where you're at work. You can't 0:13:29.840 --> 0:13:33.559 focus because your your brain is waiting for the next trigger. 0:13:33.960 --> 0:13:35.959 It's waiting for this next sign that there could be 0:13:36.040 --> 0:13:39.679 a grizzly bear that appears. It's hard to control that. 0:13:40.280 --> 0:13:42.520 It's hard to control that because it's very kind of 0:13:43.240 --> 0:13:45.280 it's just sort of a very pre programmed thing in 0:13:45.320 --> 0:13:47.840 our in our brain and our body. It's ultimately comes 0:13:47.840 --> 0:13:50.800 down to survival circuitry throughout our body. It's tough to 0:13:50.840 --> 0:13:53.520 outthink that. It's tough to just sort of think it 0:13:53.559 --> 0:13:57.199 away in the moment. Right, it's this very body like experience. 0:13:58.400 --> 0:14:03.000 So to make it, you know, fairly straightforward here, there's 0:14:03.120 --> 0:14:05.880 three kind of general things that we expect and these 0:14:05.920 --> 0:14:08.319 won't sound surprising to you. If you think about anxiety, 0:14:09.800 --> 0:14:15.360 you've got a flight response, right, the urge to flee, 0:14:15.440 --> 0:14:18.280 to escape, to avoid, to basically get away or or 0:14:18.800 --> 0:14:22.320 discontinue the stimulation. Right. You just want to get away 0:14:22.320 --> 0:14:24.320 from it, whatever you can get away from it. Put 0:14:24.360 --> 0:14:26.720 on earbuds if you're on the plane, look away, don't look. 0:14:27.320 --> 0:14:29.960 Jack up the volume on the earbuds so you don't 0:14:30.000 --> 0:14:34.520 hear the whatever it takes to discontinue the you know, 0:14:34.600 --> 0:14:39.120 the potential of being triggered. And if you can't do that, 0:14:39.520 --> 0:14:42.400 then you might I hate to use the word fight 0:14:42.440 --> 0:14:44.400 because it sort of goes with flight, but it's sort 0:14:44.440 --> 0:14:49.120 of this confrontational like response. So there can be this 0:14:49.360 --> 0:14:51.680 you know that I said earlier, the evil look on 0:14:51.720 --> 0:14:53.560 the plane, right, that's sort of a sort of an 0:14:53.680 --> 0:14:56.640 indirect aggression of passive aggression. It's a way of you know, 0:14:56.720 --> 0:14:59.160 looking at the person and just wishing that by looking 0:14:59.160 --> 0:15:00.840 at them, they will read your mind and know that 0:15:00.840 --> 0:15:04.560 they're annoying you and they should stop chewing. Those people 0:15:04.640 --> 0:15:06.880 never seem to be very good at mind reading, by 0:15:06.920 --> 0:15:12.760 the way, correct, correct, correct, and and it's it's really 0:15:12.760 --> 0:15:15.600 sad because it's kind of this wish in the moment 0:15:15.680 --> 0:15:18.160 for the person with missophonia that if you know, if 0:15:18.160 --> 0:15:20.240 they if they look at this person, that somehow the 0:15:20.240 --> 0:15:22.120 person will just stop. And it's a it's an effort 0:15:22.120 --> 0:15:24.600 to try to control the situation, and you know, it 0:15:24.720 --> 0:15:27.720 sometimes works. Right, you're in the movie theater, you get triggered, 0:15:27.720 --> 0:15:30.760 you turn around, you look at the person, and in 0:15:30.800 --> 0:15:34.120 that context, that person might if they have decent social skills, 0:15:34.120 --> 0:15:36.360 they might read the cues and go, Okay, I need 0:15:36.400 --> 0:15:40.160 to stop shaking my popcorn bag or taking my ice 0:15:40.240 --> 0:15:43.600 and you know, shaking it up and down in my 0:15:43.720 --> 0:15:45.400 in my cup. I need to stop. Maybe they have 0:15:45.680 --> 0:15:48.080 the social wherewithal to realize that, but maybe they don't, 0:15:48.640 --> 0:15:50.080 and so it just doesn't work out. But in a 0:15:50.080 --> 0:15:52.520 lot of situations, it's not that obvious what's going on. 0:15:53.600 --> 0:15:56.280 And msophonia is not a thing that people really know 0:15:56.360 --> 0:15:59.720 about in the world. It's a relatively new condition. It 0:16:00.200 --> 0:16:02.680 was first named in two thousand two, and the first 0:16:02.720 --> 0:16:07.600 research studies only two thousand nine years ago. This is 0:16:07.600 --> 0:16:11.080 a new term. It's a new thing. Very few people 0:16:11.600 --> 0:16:15.000 walking around who are the recipients of that evil look 0:16:15.360 --> 0:16:18.000 have any idea that there's a thing called miss aphonia. 0:16:18.520 --> 0:16:24.320 So it's a really tough situation. Will be right back 0:16:30.560 --> 0:16:35.720 years ago, I had vocal cord problems and they were inflamed, 0:16:35.800 --> 0:16:37.600 which makes it feel like there's something in your throat, 0:16:38.040 --> 0:16:40.080 and I was always clearing my throat, which then makes 0:16:40.080 --> 0:16:42.640 the vocal chords inflame more. And I used to have 0:16:42.680 --> 0:16:46.400 another podcast and some of my listeners that I have 0:16:46.440 --> 0:16:49.480 to stop listening because of your throat clearing, and I 0:16:49.520 --> 0:16:52.320 was offended, but they were trying to explain miss aphonia 0:16:52.400 --> 0:16:55.400 to me, and I while I accepted it in that moment, 0:16:55.480 --> 0:16:58.840 even though I feel I am the most mental health 0:16:58.880 --> 0:17:02.720 awar except ding person, I still look at personally by 0:17:02.760 --> 0:17:05.320 the way, They're right, nobody wants to hear that. My 0:17:05.440 --> 0:17:10.160 point is that even someone I think as open as 0:17:10.200 --> 0:17:14.280 me can can think, oh, come on, I mean, just 0:17:14.680 --> 0:17:18.080 deal with it. Sure it's me, you know me, get 0:17:18.200 --> 0:17:21.200 used to it. And I I really think this must 0:17:21.240 --> 0:17:25.520 be such a tough thing to have, because unlike a 0:17:25.520 --> 0:17:29.080 panic attack that comes on out of nowhere, where I've 0:17:29.080 --> 0:17:31.800 explained to people I'm not panicking for any reason, it's 0:17:31.840 --> 0:17:35.160 just happening, they can look at me and think, wow, 0:17:35.200 --> 0:17:37.520 I'm so glad, I'm not jen I don't know what 0:17:37.560 --> 0:17:40.840 that is. God speed, you're a little crazy. Good for you. 0:17:41.720 --> 0:17:46.000 But when it's something we've all experienced, I don't like 0:17:46.119 --> 0:17:50.480 that sound. That sound is skeeving me out or disrupting me. 0:17:51.080 --> 0:17:54.800 We really, I think, can have a hard time thinking. Yes, 0:17:54.880 --> 0:17:58.600 but this is not about thinking and not liking. This 0:17:58.680 --> 0:18:03.920 is a physical, anxious reactions. So you cannot expect someone 0:18:03.960 --> 0:18:07.080 to just put it out of their head the way 0:18:07.119 --> 0:18:09.320 that you're doing it, and I think it's it must 0:18:09.400 --> 0:18:13.439 be so debilitating on that level to go through the 0:18:13.440 --> 0:18:16.720 world feeling like people think you're just making a thing 0:18:16.760 --> 0:18:19.560 out of something that's right, which brings me to my 0:18:19.600 --> 0:18:23.520 next question. Is this a anxiety disorder? Is this a phobia? 0:18:23.640 --> 0:18:27.200 What what world does this fall into? Well, first, let 0:18:27.200 --> 0:18:29.520 me respond to your your last comment and I'll come 0:18:29.520 --> 0:18:32.840 back to the diagnostic question in a second. The first comment, 0:18:32.920 --> 0:18:35.639 I think you're right on, and it's really really important 0:18:36.240 --> 0:18:40.159 observation you're making. That's I think it's a really significant 0:18:40.200 --> 0:18:43.520 portion of what's so difficult for people with miss aphonia 0:18:43.680 --> 0:18:47.600 is that they live very often in this space of 0:18:48.040 --> 0:18:52.679 shame and silence and secrecy, and you know, they've oftentimes 0:18:52.720 --> 0:18:54.880 been told their whole life that it's their problem, it's 0:18:55.000 --> 0:18:59.760 their thing, it's sort of there, quirky personality, it's their weirdness, 0:18:59.800 --> 0:19:01.880 it's there. You know, there's something wrong with them. Has 0:19:01.920 --> 0:19:05.879 been the message in a way that has gotten internalized, 0:19:06.119 --> 0:19:08.320 and so it becomes this shameful thing if they walk 0:19:08.359 --> 0:19:11.440 around and I don't want to tell anybody about and 0:19:11.560 --> 0:19:15.000 that feeling really fundamentally different from others and feeling like 0:19:15.040 --> 0:19:17.960 you're carrying around this, you know, this terrible thing that 0:19:18.080 --> 0:19:20.920 nobody would understand. I think that is a big part 0:19:20.960 --> 0:19:23.320 of what's difficult. I can't tell you the number of 0:19:23.400 --> 0:19:27.480 times I've talked to patients or research participants with miss 0:19:27.480 --> 0:19:30.280 aphonia where they've told me that that has been one 0:19:30.320 --> 0:19:33.119 of the major problems for them with miss aphonia is 0:19:33.160 --> 0:19:35.359 just the social the social problem of having it and 0:19:35.600 --> 0:19:39.639 others not really just being aware or understanding it, or 0:19:39.920 --> 0:19:44.800 just being downright dismissive or you know, critical or judgmental, 0:19:45.119 --> 0:19:47.960 which people are. People are. Luck we we live in 0:19:48.000 --> 0:19:50.600 a judgmental world, so people get judgment all this stuff, 0:19:50.600 --> 0:19:53.560 and that that can be a huge part of the problem. Okay, 0:19:53.560 --> 0:19:55.320 so that's my response to the first thing you said. Now, 0:19:55.359 --> 0:19:58.160 in terms of the diagnosis, you have to first think 0:19:58.160 --> 0:20:02.080 about it this way. So it is not a formal 0:20:02.800 --> 0:20:09.879 diagnosis of any psychiatric or medical nomenclature, which is just 0:20:09.920 --> 0:20:13.080 a way, a fancy way of saying it doesn't fit 0:20:13.240 --> 0:20:19.160 neatly into any one category. And if you you can't 0:20:19.160 --> 0:20:22.439 take a step back, you say, well, okay, how do 0:20:22.480 --> 0:20:25.920 I make sense of that? There are many other conditions 0:20:26.359 --> 0:20:28.760 I'm a clinical psychologist, so I'm coming from kind of 0:20:28.760 --> 0:20:31.440 the mental health space. In the mental health world, there's 0:20:31.480 --> 0:20:36.480 many other conditions that didn't formally exist as names, as 0:20:36.520 --> 0:20:40.480 diagnostic entities until they did one day. And they did 0:20:40.520 --> 0:20:42.879 one day because a group of experts, a group of 0:20:42.920 --> 0:20:45.879 scientists sat down and decided, we're going to give it 0:20:45.920 --> 0:20:48.119 a name, and this is what it is based on 0:20:48.160 --> 0:20:51.320 the science. The science is what drives that, by and large, 0:20:51.359 --> 0:20:53.800 by the way, so when you have a newly named 0:20:53.840 --> 0:20:57.040 condition like miss aphonia, you have to crew a ton 0:20:57.040 --> 0:20:58.840 of science. You've got to do a ton of science 0:20:58.840 --> 0:21:01.560 to be able to figure out what is it, how 0:21:01.640 --> 0:21:04.000 is it different than other things, what do we do 0:21:04.040 --> 0:21:07.479 about it to treat it? That's all science. That's all science, right, 0:21:07.560 --> 0:21:11.119 and science just takes a while. Science is expensive. Science 0:21:11.119 --> 0:21:14.680 takes a while. So you can't fit it neatly today 0:21:14.760 --> 0:21:17.080 into a category and say it is this or it 0:21:17.160 --> 0:21:20.760 isn't that. It's not an anxiety disorder, it's not an 0:21:20.760 --> 0:21:25.240 obsessive compulsive disorder. It's not a phobia. I think you 0:21:25.280 --> 0:21:31.199 think about it this way. It's a multi disciplinary problem. 0:21:31.240 --> 0:21:34.480 It's not a psychiatric disorder. Now it might be that 0:21:34.600 --> 0:21:38.160 science over time determines that it is best to define 0:21:38.200 --> 0:21:40.440 it as a psychiatric disorder. And it might be that 0:21:40.560 --> 0:21:43.959 some of our work at Duke is a part of that. 0:21:43.960 --> 0:21:46.360 That might happen, but that might not happen. Also, we'll 0:21:46.359 --> 0:21:48.680 see the science has to be done to figure that out. 0:21:48.960 --> 0:21:50.680 For today, you can think of it as a multi 0:21:50.680 --> 0:21:59.960 disciplinary problem that probably sits in the intersection of psychiatry, psychology, neurology, audiology, 0:22:00.480 --> 0:22:03.000 an occupational therapy, to name a few. It's sort of 0:22:03.040 --> 0:22:06.399 sits in that nexus point and that's a preview for 0:22:06.400 --> 0:22:07.879 what I imagine we'll talk about in a little bit 0:22:07.880 --> 0:22:10.640 about what to do about it, to treat it. Well. 0:22:10.640 --> 0:22:13.560 This is fascinating because as you're saying that it's it's 0:22:13.640 --> 0:22:17.680 reshaping my mind, and I'm thinking, right, this is a 0:22:17.680 --> 0:22:23.760 auditory neurological thing and it's not about It's like where 0:22:23.800 --> 0:22:28.560 it can be friends with anxiety, is that you can 0:22:28.600 --> 0:22:31.640 be anxious about the fact that you have it. How 0:22:31.640 --> 0:22:34.480 are people going to react? There's that shame if people 0:22:34.480 --> 0:22:38.719 are shaming you, or that sort of constant vigilant looking 0:22:38.760 --> 0:22:42.960 for triggers, very similar to people with anxiety, but it's 0:22:42.960 --> 0:22:46.480 not inherently coming from an anxiety disorder. So this is 0:22:46.480 --> 0:22:49.879 just really interesting. It's its own thing, or maybe it 0:22:50.040 --> 0:22:52.960 is and some people coming from it. So in other words, 0:22:52.960 --> 0:22:54.720 if you were to take under people with an anxiety 0:22:54.720 --> 0:22:59.040 disorder and try to try to separate out what part 0:22:59.040 --> 0:23:02.680 of that is really about missophonia and anxiety specifically related 0:23:02.720 --> 0:23:05.280 to miss aphonia, and what part of that is not. 0:23:05.560 --> 0:23:08.000 If you were to do that, at least with those 0:23:08.000 --> 0:23:12.119 people who report having missophonia, you I'm pretty sure you 0:23:12.119 --> 0:23:13.840 would find that a lot of those people that have 0:23:13.920 --> 0:23:18.520 an anxiety disorder actually a missophonia, not an anxiety disorder. 0:23:18.560 --> 0:23:20.080 If you were to sort of if you were to 0:23:20.080 --> 0:23:21.960 do a study I'm just thinking as a scientists, or 0:23:21.960 --> 0:23:23.960 if you were to do a study where you define 0:23:24.040 --> 0:23:28.240 things differently, measured them differently, and separated them out, I 0:23:28.280 --> 0:23:29.880 think you would probably find a lot of people who 0:23:29.880 --> 0:23:33.359 are getting diagnoses of psychiatric diagnoses which which may be legitimate, 0:23:33.760 --> 0:23:37.520 of course, but they might also be kind of infused 0:23:37.560 --> 0:23:40.879 with or in a way that's just not easy to 0:23:40.920 --> 0:23:44.480 separate out, combining miss aphonia into it, and it might 0:23:44.480 --> 0:23:47.159 just make it difficult to really tease those two things apart. 0:23:47.480 --> 0:23:50.159 And people of missophonia can have all sorts of different 0:23:50.160 --> 0:23:54.520 psychiatric co occurring disorders, and they can have no psychiatric 0:23:54.960 --> 0:23:57.480 co occurring disorder. So this is the thing is you 0:23:57.520 --> 0:24:02.720 can have people with any anxiety disorder, with any mood 0:24:02.720 --> 0:24:08.080 disorder or substance used disorder, or impulse control disorder or 0:24:08.119 --> 0:24:13.879