#233 - Emma Bonus Episode

Adeel Ahmad [0:00]: Welcome to this bonus mini episode of The Misophonia Podcast. This is a follow-up to my last interview with Emma. She sent me an email after our talk and realized that she felt like she hadn't fully explained how it feels to have misophonia. So she wanted to give this update in the hopes that it might help folks who are learning to understand what's happening. So here it is, pretty raw, and enjoy, and look in the show notes for links to the conversation with Emma and her artist website.

Emma [0:43]: So I'm gonna just try and describe what misophonia feels like, which I've never done before, so bear with me. Okay, so we will have a nervous system, right? And so misophonia is from the Greek word, hatred of sounds, which is a bit misleading because it is a hatred of sound, but it's only very specific sounds. And most people with misophonia report having a hatred of particular, let's just call them mouth sounds. So typically this is kind of eating sounds and this is very much my experience.

Emma [1:33]: So we all have a nervous system and what happens is when people with misophonia hear these specific sounds which range from and vary, I'm not going to list them all now, our nervous system is activated so I'm thinking about the analogy of having an exposed root canal which when you have something hot or cold touching that exposed root canal it sends a shockwave of pain through the body and it's a very jarring maybe a bit like an electric shock I guess very painful and your whole kind of nervous system is activated. It doesn't feel exactly like that but let's think of my nervous system and people with misophonia as having an exposed nervous system and when they hear these particular sounds for some strange bizarre reason which they don't know why it activates this exposed nervous system.

Emma [2:40]: So what happens is as soon as I hear those sounds I lose all cognitive function I go I think I actually go into freeze mode but obviously it's fight flight and freeze. People with misophonia because they're going to fight flight and freeze they will feel rage and they will feel often disgust so it's very common and this is what's happened with me that it starts off around the age of 12 preteen perhaps it's hormonally influenced they don't know and there might be just a couple of sounds that trigger this fight, flight and freeze.

Emma [3:32]: Usually it's with people that they live with. Strangely a lot of people report it to be their dads. Certainly that was the case for me. And then I have found as you get older the repertoire of noises actually increases. The intensity stays the same but the repertoire, the amount of noises increases. I think it's because, for a range of things, our intolerance decreases after having to mask it for so many years, living with it. I used the analogy recently with um if you can imagine that you're in a room, trapped in a room, you can't get out and there's a dripping tap. First of all you can kind of like tolerate the dripping tap a bit and then you start using mind games with yourself where you're able to compartmentalize it and then you're just starting to get slowly more and more angry and at the end of the at the by the end you are so your tolerance has completely vanished and you just are screaming with you just get me out of this fucking room kind of thing that's where i feel like I have got with misophonia and my tolerance for sounds. So what's it like to live with misophonia? Okay so I'm gonna just use because they are pretty much eating sounds and mouth noises which everybody does so let's just use the example of going to a restaurant. So you're in a restaurant with friends invariably they are gonna make some noises and if they're not making noises then people around you are going to be making noises.

Emma [5:14]: Obviously, these noises are unpredictable. So that means that you, first of all, you're scared you're going to hear those noises. So you're like a meerkat. I often think I'm like a meerkat. So I'm the role of the meerkat in their pack, who is looking out, waiting for the next danger, because it feels like this is what it feels like. So the nervous system is not connected to your cognitive function there is no point in trying to reason with this because none of that works um it's like that it's broken that shield whatever the the exposed nerves it's broken there's nothing there to protect it so i'm sitting there i don't know whether you're going to make some noises. I don't know whether the table next to me is going to make noises.

Emma [6:05]: I am not relaxed, okay? You make the noises, let's say, or anybody, anyone makes the noise. Immediately my nervous system is attacked, it's painful. It's not an irritant, let's make that clear. This is not an irritant. This is complete pain. Go back to the analogy of a tooth exposed, a nerve exposed. That is what it's like. But you're in company. You need to appear calm. You need to follow a conversation. You are aware that you're gonna go into rage because you've dealt with this many, many, many times.

Emma [6:52]: You're dealing with the feelings and the anxiety. You don't want to go into rage. That's really, really embarrassing. Because also, to try and explain what it's like to have misophonia to people, which I have tried, is almost impossible. Because unless you've actually experienced it, there's nothing else that you're experiencing in the world, in your life experience, that can let you truly step into my shoes. I mean, people often say it's like when fingernails go down a blackboard. Yes, that is awful. But first of all, that's only a very limited amount of time that happens in a classroom and rarely happens.

Emma [7:39]: And misophonia happens all the time. These are very, very common noises that people make. So I can't even walk down the street because I've, when I have, someone might make one of the noises as they pass me. Because what also happens is once this nervous system is activated, it takes a very long time for the activation to kind of calm itself. The nervous system is like, you know, the sort of sirens have gone off. Mayday, mayday, warning, warning, warning, warning. And then, you know, your heart races, you have a rush of adrenaline, you have, you start sweating. You know, all this happens in your body because remember, your mind is not connected to what's going on with your body.

Emma [8:27]: There is no control. So it does take a while, a good while for you to calm down again. And again, let's go back to being in a restaurant. You're not just going to hear the one noise. You're going to hear many noises. And also, you don't know when the next one is going to come. So you might start relaxing, but you're still on high alert. So your nervous system is constantly on high alert. I hope that kind of explains what it feels like to live with misophonia. I'm always happy to talk about it. I don't like talking about it. I wish I didn't have this horrible, horrible condition. It's completely ruined my life, if I'm honest.

Emma [9:15]: It ruins relationships. It makes me not want to go out. It makes me not want to see people. It's cruel. Anyway, the last thing to say really is please don't ever, ever take this personally because this is never about the person or a reflection of how I feel about the person. This really is something that I just cannot control at all. OK.