Listen to this episode at theallusionist.org/misophonia
This is the Allusionist, in which I, Helen Zaltzman, throw shots of language down the ice luge I lovingly hand-carved.
You heard her in the Behave episode explaining how cognitive behavioural therapy works. You heard her in the Novel Remedy episode talking about why she sometimes prescribes novels to aid the mental health. And this episode, Jane Gregory is back, to talk about a condition that statistically 20 per cent of you have, so, I hope this is a useful episode for you.
On with the show.
JANE GREGORY: I first heard the term ‘misophonia’ when I was reading an article in the New York Times. I'd say at least five people sent me that article to say, “Hey, this sounds like you.” I read the word misophonia, read the description and just thought, oh, right, okay, yep, that's me, that's exactly what I've experienced my entire life.
HZ: How did it feel to have a word for what you've been experiencing?
JANE GREGORY: For me, it was a relief to have a word for what I'd been experiencing. It was nice to have an alternative theory for what I was experiencing, because I thought for a long time that I was really uptight or maybe a bit controlling over other people, and that that was a problem with my character, as opposed to it actually being a problem with the way that my brain processes sounds. So it was nice to have an alternative explanation for that.
Do I say doctor? Or just Jane? I dunno.
HZ: Yeah, if you want? You could do both.
JANE GREGORY: I’m going to go with Jane.
I'm Jane Gregory. I'm a clinical psychologist researching misophonia, and I'm the author of the book Sounds Like Misophonia: How to Stop Small Noises from Causing Extreme Reactions.
HZ: Tell us where the term ‘misophonia’ came from.
JANE GREGORY: There's a husband and wife research team -
HZ: Pawel Jastreboff and Margaret M. Jastreboff.
JANE GREGORY: - who work mostly in the field of tinnitus, and in 2001, 2002, they had seen a whole lot of people coming through their research in their clinic who had this very specific reaction to specific sounds, most commonly eating sounds, but also some other repetitive sounds, and so they were looking for a word to describe this phenomenon, and apparently they got the help of the linguist -
HZ: Actually classicist Guy Lee.
JANE GREGORY: - to come up with some root parts of words to come up with the term ‘misophonia’, miso- coming from ‘hatred’ and -phonia ‘sounds’. So, the literal translation is hatred of sounds, but they have since said that they never intended for it to be interpreted literally. They just wanted a term that was spoken, catchy, easy to remember, and that sort of generally captured the idea of it, but that it's not really hatred of sounds and it's more an intense reaction to specific sounds, and certainly not all sounds. And one of them actually said that part of the reason he chose that over the other options was that he really likes miso soup and so, adorably, that's the word that he ended up choosing.
HZ: Way to ruin miso soup for yourself.
JANE GREGORY: Well, if anyone's slurping their miso soup, then you get misophonia in reaction to miso soup.
HZ: And what was it known as before that?
JANE GREGORY: There's an audiologist who was working with people with misophonia -
HZ: Marsha Johnson.
JANE GREGORY: - back in the 90s and she referred to it as Selective Sound Sensitivity Syndrome, or 4S, and that's actually
HZ: Oh, that's a sibilance nightmare!
JANE GREGORY: Yeah, if you react to the letter S, then hearing that said out loud is not going to be pleasant. It's a mouthful anyway, and if you just call it 4S, it doesn't mean much on its own. So misophonia was the term that took off, even though Selective Sound Sensitivity Syndrome, while it's a mouthful, is probably more accurate in its description.
HZ: A lot of people don't like a lot of noises. Personally, I can’t stand:
Cutlery on matte glaze crockery
Motorbikes
My grandmother scraping her fingernails along the tablecloth
Guitar strings
Autotune, especially how it sounds on radio-friendly mid-tempo country rock
Chewing gum
Leafblowers
The way my husband clears his throat [husband clears throat in background]
Clipping nails on the bus - WHY
The music of Maroon 5
But disliking these noises, even physically recoiling from them - that is not the same as misophonia.
JANE GREGORY: Misophonia is an extreme reaction to certain sounds and not an aversion to all sounds, but an extreme reaction to specific sounds. And the most common sounds are eating and heavy breathing and kind of repetitive sniffing and coughing and things like that. Which are also sounds that most people don't like the sound of, but people with misophonia will get a much more intense reaction, so it might be more like a fight or flight kind of response, a feeling of anger or panic as opposed to feeling annoyed or irritated or disgusted by the sound. And there's a bit more to it in terms of what goes on around the sounds as well. So it might be feeling trapped or helpless when they can't get away from these sounds. It might be listening out for sounds, even when there aren't any, or continuing to listen to see if the sound is still going, even if it's stopped. And doing things to organize your life around sounds or to cope with sounds. when they happen. So most people who don't like a sound will just deal with it. For people with misophonia, they have to do things to not be able to hear it or to be able to cope with their reactions to it.
HZ: Rather than just grimacing.
JANE GREGORY: Exactly. I mean, there's also some grimacing, but probably also some glaring.
HZ: Ooh, glaring!
JANE GREGORY: Some people end relationships over it, some people move house because of it, some people can't work because of it. So there are people who have it to such an extent that it completely disrupts their lives.
HZ: When you're working with patients with misophonia, or maybe people that don't know they have misophonia yet, how do they tend to respond when they find out there's a term?
JANE GREGORY: Every time that I talk about misophonia, somebody in the room says, oh my goodness, that's me, or that's my mum, or my sister, or that's why my dad made us go upstairs to eat crisps in the house when we were kids. They've suddenly got an explanation for something that didn't really make sense, that maybe was contradictory to the rest of their life. So a lot of people with misophonia, for example, are really kind, warm, gentle people, and then they get this extreme rage in response to sound and want to get really angry at the person or even get aggressive or shouting at them, maybe even get images of like wishing they could hurt them because it's causing such an intense reaction. And all the pieces kind of fall into place once they discover that there is a reason for the way they're reacting.
HZ: And then when they discover that there's no cure, are they like, "Oh no, delete the word from my brain, that's unfair"?
JANE GREGORY: Well. That's tricky because, I mean, there's no cure in terms of, there are aspects of it that are just the way our brain processes things, and there's sort of natural variation in the way our brain processes things. But in terms of the really extreme reactions, there are things that we can do to help bring down the intensity of those reactions. So there's some hope, but not total hope in change.
There was a paper that came out last year that was a what they call a consensus definition. So it was a panel of experts who came together to decide how we should currently define misophonia based on the information that we have. And from that they agreed that misophonia should be called a disorder. And one of the reasons that they said that is because that gives validity to how severe it is for some people, the impact it has on people's lives, gives a bit of credibility to the condition so that people can get help, accommodations in school and work, and can get help from healthcare professionals. But what that also does is put a disorder label on something that people - not everyone considers themselves to have a disorder who has misophonia. I don't consider myself to have a disorder, I consider myself to have misophonia; but it doesn't affect me on a day to day basis. When we think of disorder in psychology terms, we think of things that cause significant distress and impairment, and that's definitely not the case for a lot of people with misophonia.
And so when I was writing the book, I had people reading drafts and commenting on it and I was getting the exact opposite feedback on this. Some people were saying, "We should only call it misophonia when it's at a disorder level, and anything else that isn't a disorder-level problem shouldn't be referred to as misophonia." And in the exact same space in the comments section, someone else had said, "I don't think it should be called a disorder, because that then stigmatises it as a problem, and actually for a lot of people it's just an explanation for how their brain works and how they respond to sounds. And having a name for it is incredibly validating, and so we need the name to capture all levels of severity, not just the people who would be at the level that we might consider a disorder."
HZ: And where did you land?
JANE GREGORY: Well, I couldn't decide. That's the problem. In my work, I refer to it as clinical misophonia and subclinical misophonia, and that helps me to make the distinction. And we do the same with disorders like OCD, where if someone currently meets the criteria for a disorder, we would say they have clinical OCD, and if someone has OCD, but at the moment it's not having that level of distress or impairment that they currently would need help for it and would meet the criteria for a disorder, we'd say they have subclinical OCD.
So I've made the distinction the same in misophonia, and part of my research now is trying to work out what's the difference between people with clinical misophonia and subclinical misophonia? What is it that's different in those people that tips it over into that sort of disorder level problem?
HZ: Jane’s book Sounds Like Misophonia is structured like a course of therapy to help you develop techniques to deal with misophonia. And part of that involves using words in particular ways. For example the word ‘theory’.
JANE GREGORY: When I talk about theories in the context of how I use it in the book, it refers to what feels true to you in any given moment. It's sort of your working theory of what's going on. And it doesn't have to match your rational theory of what's going on. It's tuning into, well, what's your body telling you? What does it feel like is happening? What's your felt sense of what's happening? Even if you know rationally that it's not true. And one of the reasons I use the word 'theory' is partly because it implies that it's not permanent, that theories change as we learn new information, so it probably will change over time.
The other part is that I work from a cognitive behavioural therapy perspective, and the cognitive part of CBT is often talked about as being thoughts. And telling someone that they need to change their thoughts could sound - it’s quite shaming, it sounds like you're saying “You're thinking wrong and all you've got to do is replace that thought with the right thought and then you won't be feeling as bad as you do.” But the way we feel is based on not just what's happening in that moment, but our past experiences, what we've learned from our interactions with other people and all of our past experiences, it can influence what happens in that moment.
So when I talk about theories, I ask people while they're feeling the emotion to tune into their body and just reflect on: what does it feel like is going on? And then the cognitions become a verbalization of what your body is experiencing. And the idea that our interpretation or thoughts influence our feelings I think is not really accurate, because often it's the other way around: our thoughts are an attempt to explain what we're feeling in our body. And so theory is just an in between way of capturing that, so what's your theory about what your body is telling you? And once we've got the theory then we can look at, well, do we want to generate an alternative, a competing theory? And if we've got competing theories, then we can do little experiments to test that out and find out which one we think is the most credible and go with that, until something changes or we get new information that makes us come up with a new theory.
HZ: Do theories always have to be verbal thoughts?
JANE GREGORY: No. Sometimes it's an urge, sometimes it's just a vibe, a feeling. It's easier in a therapy sense to put words to it so that the therapist can work with the person to try and make sense of what it means, but you don't have to be able to put words to a theory to know for yourself what it means. Especially if they know that the feelings that they're having in that moment, the theories that are sort of coming out of their body in that moment, are probably based in past experiences rather than what's happening now. So a really common one in misophonia is a feeling that there's something wrong with you for reacting. And this is usually because people have been told there's something wrong with you for reacting this way. And so understandably, that's what feels true in the moment. Even once you've heard there's a word for it, misophonia, it's not you, it’s the way your brain processes sounds, it still feels true in the moment. So then if we can recognize that that's what's going on and maybe tap into where that came from and understand that that's an old theory and maybe it's time to develop a new theory that you can hold on to in those moments.
HZ: I was so interested in the tool which is replacing the word 'but' with the word 'and'. As a conjunction, not as a body part.
JANE GREGORY: That's where I was going first! Yeah, I really like getting people to think about things as "this and this" instead of "this but this". Because as soon as you put but into the sentence, it seems like the two things can't coexist. And actually, we can hold conflicting ideas side by side. So it might be, I really want to be able to speak to my parents on Zoom, but they keep showing up with snacks every time we do it. And so if you replace 'But' with 'And' it's, "I really want to be able to talk to my parents on Zoom, and they keep showing up with snacks." It's a really small change, but it really changes the hope attached to possible change. So now that's just a describing of the situation, and now you can decide what to do with that information rather than being, "I can't do this because of this, I can't speak to them on zoom because of they've always got snacks." It's, "I'd like to, and..."
HZ: So simple, and so smart.
JANE GREGORY: Yeah, those are the tools that are the hardest to convince people to use because they seem too simple to possibly work.
HZ: I wonder what people want. Do they want some kind of spell where it's like, yes, if you make a distillation of cowslip and put it out in front of a blood moon, and then pour it into your ears…
JANE GREGORY: Well, I think what people want is not to feel like it's their fault that they are the way they are. And if something seems simple then they feel like they should have thought of it. But there's no reason they should have thought of it, because we think and respond and feel the way that we do because of the sum of all of our past experiences and once you've learned something you then know it. But there's no reason to have known it before if you haven't learned it.
HZ: It's okay not to know absolutely everything.
JANE GREGORY: Indeed.
HZ: I have to tell myself this.
JANE GREGORY: Me too. It’s my mantra.
HZ: Does it ever feel a bit victim blamey to you that you have to learn techniques to manage your response to certain noises, rather than other people learn to eat silently?
JANE GREGORY: I mean, personally, I would love it if everyone could just eat neatly and quietly. For a long time, I didn't feel like I should be the one that has to deal with my own reactions to this. I felt like people should just eat more quietly, but I was forced to update that theory. One of my kids cannot eat with their mouth closed. And I had always believed - my very strong theory was that if you eat with your mouth open, it's because you just don't care about other people around you or you just never learned good table manners. And then I had this child who I had been very gentle and calm and helping them to learn table manners and eventually we had to talk about it, because it was starting to stress them out at the table that I would remind them to close their mouth when they were eating. And they said, "I just can't. It's so uncomfortable to keep my mouth closed, and I have to remember to keep it closed, I can't just keep it closed. So that means I have to be thinking about what my mouth is doing, and then I can't enjoy the food, and then I feel like you're judging me because I can't keep my mouth closed."
And so actually my response was causing distress and tension and stress for them. And I was forced to revise my theory, which is that actually, some people's mouths just don't work that way, and they have to be allowed to eat too. And we agreed together that actually it was much more important for meals to feel calm and not so stressful for the kids than it was for them to feel calm and not so stressful for me. So that then became: I now need to work out how I can manage my reaction to those sounds, and it's not their responsibility to fix that for me. But also my husband has a lot of trouble keeping his mouth closed, and so I think it might be more of a genetic thing and actually it's just tricky for people.
HZ: That sounds like a very mature conversation to have with a young child though.
JANE GREGORY: I didn't verbalise all the things that I was thinking about at the time, but what I wanted to find out is why it was stressing them out that I was asking them to do this. Because I had convinced myself that I was doing a really helpful thing in teaching both my kids good manners, and that that would help them in future situations. And so it felt like I was doing it for them, even though really what I needed was the table to be quieter. And so when I had the conversation with them, I wasn't including my own responses to that, I was just trying to understand what was going on for them and why it was stressful and, yeah, it came from that.
HZ: There were lots of terms that piqued my curiosity reading the book. Could you explain what ‘mesearch’ is?
JANE GREGORY: Mesearch is when a researcher is researching a particular topic that they have a vested interest in either because they personally experience the phenomenon that they're researching or they have somebody or something close to them that means that they're personally invested in the research. And a lot of people in the research world judge this and think that if you're researching a condition that you also have then you're going to be biased and not as effective in your research. But for people who have the condition, they tend to trust that research more because they know that the person doing the research is actually coming from a personally invested, passionate place. And certainly with misophonia most of the people who are researching misophonia either have it themselves or have a loved one with misophonia. There was almost no funding for it for a really long time. And so the only people who were doing it were people who really wanted answers either for themselves or for somebody else, myself included, obviously.
HZ: I learnt the term ‘alexithymia’ thanks to you. But explain it, please.
JANE GREGORY: Alexithymia is when people have difficulty - or can't at all - identify their emotions or express their emotions or put words to their emotions. It doesn't mean that they don't feel emotions; it just means that they might have trouble putting words to what they're feeling, ir maybe don't really relate to the terms that people use for their emotions.
HZ: And how does this present in real life, and what kinds of problems does it cause?
JANE GREGORY: if it stops people from tuning into how they feel and processing how they feel, then that can cause a problem. But we don't need to be able to label or express our emotions to be able to process what we're feeling. And sometimes if I'm working with somebody who has alexithymia, what we might do instead is just tune into what the body's doing, pay attention to sensory information - how does your heart feel? How tense do you feel? - and just use that as a cue for what's meaningful rather than needing specific emotion words. So there are ways around it and people who have alexithymia usually find really skillful ways around it so that it's not such a problem. But yeah, I think it's a problem if you then can't access any kind of emotion processing at all.
HZ: There's a section in the book about labelling our emotions and experiences. What does that involve, and what's it for?
JANE GREGORY: For people who can label their emotions, it's an incredibly useful tool for validating how you feel. So sometimes just having a word for how you feel can make it feel more okay to be feeling that way. It can bring down the intensity of the emotion. It also helps you to engage with the emotion in a neutral way. So instead of trying to escape the emotion or judging yourself for having the emotion, you're simply just stating that it is there and present which can then help you get through that emotion.
HZ: I asked members of the Allusioverse if they had any questions for you about misophonia, and boy did they! A lot of them were: "Why do I want to murder my partner for making eating sounds, but if it's a pet or a video of a tortoise, I don't mind at all?"
JANE GREGORY: That is an excellent question, and we don't entirely understand why it is, but we do know that that is absolutely a real thing, that the context really does play a huge role in the reaction in misophonia. So some people - I had a friend who gets enraged at the sound of their partner eating, but one day they got that rage and looked around and it was their baby, not their partner, and the reaction instantly disappeared. Hearing stories like that, we know that it's not just the acoustics of the sound, so it's not just that a turtle or a puppy It sounds different when they're eating because somebody will have the reaction and then when they discover it's not the thing that they thought it was, even though the acoustics haven't changed, the reaction will disappear. And there was some research that was done - this is one of my favorite pieces of research that was done at Concordia University in Montreal, where they were comparing people with and with or with high misophonia and low misophonia. And the people with high misophonia had much more intense reactions once they detected the sound than people without misophonia, but only once they identified what the sound was. They didn't get the reaction until their brain recognised the sound.
And they did that by covering the sound with another sound and then the masking sound was slowly taken away, and once they recognised the trigger sound, that's when they got the reaction. And there was no physiological difference before that in the people with misophonia compared to the people without misophonia. So we know that there is something about identifying the sound and what that sound means to that individual that contributes heavily to the intensity of the reaction. And that's not to say that it's all context, but it shows us that context is very relevant.
HZ: Someone pointed out, "I'm noticing that most of the trigger sounds people mention are human made sounds in some way, so I'm wondering if the kind or level of emotional reaction is connected to having a person to direct the anger at, or anger, etc, at."
JANE GREGORY: That's really interesting. So whether it's that there is an entity to direct the anger at, or is it because of that context element - because that is a person who is theoretically choosing to make a sound that bothers other people. And so part of it is the interpretation of that is that as a society we should be looking after each other. And there's a theory called Social Exchange Theory, which is about the rules that help us to get along calmly and comfortably. And it includes things like reciprocation so we contribute equally to each other's comfort and safety and needs, and if I'm working really hard to make sure that I don't make any noises that will bother other people then you should be reciprocating, and if someone breaks that rule then it's not just the sound that's the problem, it's the violation of that rule that's the problem. And that's one of the ways that I ask people to measure their reaction, is does it give you a sense of threat or a sense of violation? And that's the bit that we then want to try and change, the idea that the sound itself is a violation, and part of that could be because of that feeling of rules being broken, or the things that you're doing to look after other people aren't being reciprocated by the people around you.
That also contributes to one of the theories as to why some people react more intensely to people closest to them: because if the person closest to you is breaking those rules, you actually need the person closest to you to be following the rules, the social exchange rules. And so it's more of a violation if they break it than if some stranger on the train breaks those rules.
And especially in parent-child relationships, where the child really needs to know that the parent will be following those rules and meeting their needs, and if they're not, because they're making this sound that's upsetting to them, it feels like more of a violation. Although that's just one of many theories as to why people closest to us cause stronger reactions, because sometimes it's just repetition that each time you hear the sound, it's like you're triggering off the memory of the last time you heard that sound, which is triggering off the memory of the previous time. So he reaction gets worse and worse over time, and the person you're closest to is the person you hear the most often. So that’s another theory as to why that could be.
Another theory is that sometimes if there's pre existing conflict in a relationship sometimes that can cause a stronger reaction; so if there's a bit of conflict in the home or just tension around the home, even if it's not necessarily directly with that parent, your brain can kind of attach those sounds to an experience of conflict. And that's another one of the theories of misophonia, is that people with misophonia, their brains more readily attach meaning to sounds. And so if you're in a stressful situation, your brain will connect the sounds from that situation to that stress and tension.
HZ: Quite a lot of people asked about the correlation between misophonia and other conditions, so, neuro spiciness, stimulus issues, synesthesia. One person asked also about - they wear hearing aids and so certain noises they're a lot more sensitive to. Are these things linked or is it coincidence?
JANE GREGORY: I don't think it's coincidence. They are definitely correlated. We keep seeing that again and again in the research. One of the ones that I've been particularly interested in is the association between autism and misophonia. And there's only been a couple of studies that have looked at the two together, and what seems to be emerging is that the common thread is general sensory sensitivity. So a general sense of sort of being over-responsive to sensory information, more tuned into sensory information, and more likely to apply meaning or context to sensory information, and that is really a very common feature in both autism and ADHD and therefore it predisposes that person to develop misophonia. Once you account for the general sensory sensitivity, there doesn't seem to be a link. Autistic people are more likely to have misophonia, but people with misophonia are not more likely to have autism, if that makes sense. Because the core feature of autism is something that predisposes someone to having misophonia, but you can have misophonia very much in the absence of other conditions, phenomena, disorders.
HZ: I found this really fascinating from one of the listeners; they say: "I have both misophonic and ASMR responses, so I can have an almost angry response to mouth sounds, which seems to run in my family, or a blissful feeling from many sounds, including mouth sounds. I've also found that I can switch the two. When the sound of eating is bothering me, I can turn the disgust into the feeling of warmth and happiness by focusing on identifying with the person and thinking about how we all have this physical being and we all eat in the same way; I just have to try to love them. And it totally works. Suddenly, my misophonic anger turns into warm ASMR feelings of actual physical bliss. Has Dr Gregory ever heard of this happening for other people?"
JANE GREGORY: That's amazing, and well done for doing that. Because there's a theory that ASMR and misophonia are closely related, and that they're both an over-connection between sounds and emotional experience. It's just that one way connects it in a negative way and one way it connects in a positive way. So somebody with misophonia might also be predisposed to ASMR; it just might be for different sounds. It's not very often that I hear someone who is able to convert their misophonic response into an ASMR response. I think that's amazing.
One of the things that misophonia can do is disconnect you from the person, and it sounds like what that listener's doing is manually reconnecting with that person. And I did that, that was one of the techniques that I tried for myself, which is what we call opposite action. And that's when, whatever your body tells you to do when you're getting this kind of reaction, if you know that it doesn't fit with the situation, then instead of doing what you feel like doing, you do the exact opposite. So for me, with my husband, I knew he wasn't making these eating sounds deliberately to annoy me or upset me. I knew he couldn't really help it, that's just the way that he ate. And so instead of glaring at him, which was my instinct, I would practice gazing adoringly at him. And by doing that, it doesn't make me like the sound; I certainly don't get any kind of ASMR type tingle from the sound; but it took the sting out of the sound. Because I stopped acting as if he was trying to hurt me. And our behaviour shapes what feels true to us. And that's because, as I was saying before, our experiences shape what feels true in the moment. So if we create new experiences, that can also shape what feels true in the moment. And so what then felt true to me in that moment was: this is a person that I love, and am connected to, who happens to make a sound that I don't like, but that doesn't change how I feel about him.
HZ: I liked this question: “Are there any characters in literature that we would now consider to have misophonia?”
JANE GREGORY: I dunno if there are any in literature, but certainly some historical figures are starting to be re-evaluated as potentially having had misophonia, in the same way that some historic figures are now being understood to have been neurodivergent in other ways. So apparently Winston Churchill had a sign up that no small noises were to be made in the war rooms and that they had to have quiet typewriters because he reacted to the sounds of loud typing. Apparently Queen Elizabeth, she insisted on round ice cubes in the room with her, not square ice cubes, because the sound of round ice cubes makes a different sound to square ice cubes.
HZ: “What are the most common noises, and what are the most leftfield ones that you've encountered as misophonia triggers?”
JANE GREGORY: So the most common: definitely eating sounds. Any kind of repetitive nose and throat sounds are really common as well, so repetitive sniffing or clearing your throat. Some of the more leftfield ones are - for me, pigeons is one of the ones that really sets me off, and a lot of people aren't remotely bothered by the sound of pigeons, but that sort of repetitive sound of pigeons, if I can hear that, I feel like they're doing it deliberately, like they're taunting me or something. It really hits straight to the core.
I've known people who have said that the sound of pouring boiling water causes a reaction, but the sound of pouring cold water doesn't cause a reaction. And if you listen to the two, you can actually hear a difference in the two sounds and for some reason one causes a reaction and the other doesn't.
HZ: "Can you connect misophonia with words that people react strongly to? Like" - brace yourselves - "moist." I'm just the messenger here. Someone submitted that question. I wouldn't put moist in your ears without just cause.
JANE GREGORY: It's a very similar reaction, and some people with misophonia do react to specific words or even specific letter sounds. So the letter S, the letter K, some people just get a reaction to those, and if words contain those sounds, then they're more likely to cause a reaction. But a word like 'moist', it's not just the sound of the word, it's also the connotations of the word, so you get a combined feeling there that isn't just about the sound of the word, but also what it brings up for you. And that fits with the idea of people with misophonia: their brains not only have trouble tuning out repetitive sounds, but also are more likely to put meaning on those sounds, which may be why it's harder to tune out because your brain is telling you that this sound is harmful or dangerous in some way. So yes, it's a similar kind of thing.
HZ: "What's the relationship, if any, between misophonia and hyperacusis?"
JANE GREGORY: hyperacusis is a sensitivity specifically to loud sounds. And people with hyperacusis, once you get past a certain decibel, they hear sounds as louder than they actually are. So they often experience pain much sooner as volume goes up than people without hyperacusis. That can actually be tested with a test - LDL, I think it's loudness discomfort level, the volume at which sounds become uncomfortable to hear and their LDL, their discomfort level, happens much sooner. But one of the overlaps between hyperacusis and misophonia is the added element, the layer of emotional response to that: so feeling overwhelmed by the sound; feeling like they have to escape the sound; feeling bad about yourself because of the way that you react to sound or feeling or being judged for the way that you react to sound. And similar to people with misophonia, if you tell somebody that a sound is uncomfortable and they don't perceive it to be uncomfortable, then they'll understandably be confused by that and might say, "Well, just ignore it, it's not that bad." And actually, if you're experiencing it as bad, then you're - well, I think I was talking before about the disconnection, so it also creates that kind of social disconnection, because you're experiencing something different from what the other person is experiencing.
HZ: A lot of people had a question along the lines of this one: "My partner is leaning over me to look at something on my laptop while chewing. I love him, but hate this. What's a tactful way to request that he do one, but not both things at the same time?" Basically, what are tactful ways to ask the person who is triggering your misophonia to do something else? Is there a tactful way?
JANE GREGORY: It is really hard to do it tactfully, because usually you're wanting to do it once you're already annoyed, which means it's coming from a place of anger, which means it sounds accusatory. And actually, the other person's usually just doing it without even thinking because it wouldn't bother them, so it doesn't occur to them that it bothers you. And even if they know that it bothers you, it's a very habitual thing to do. It's really hard to change habitual behavior. So what I suggest: the first step is have the conversation at a time where it's not happening, so wait until later to have the conversation, and then have a discussion about what it's like for you, what the problem with it is. So for me, the way that I describe misophonia is I tell people that I can't concentrate if I can hear these sounds. So it's not that you're doing anything wrong - although sometimes that's questionable - but if someone's trying to have a conversation with me and they're eating, I won't be able to focus on the conversation. So in order for me to have a conversation with you where I can focus, I need for it to be when you're not eating. And so either we can continue to have the conversation and I won't be fully present, or we can wait until you've finished eating. And that way it's giving the person a choice about it and letting them know what the consequences are for me.
But one of the times I think it's really hard to have a conversation is when you've got competing needs between the two people. So, for example, if somebody has ADHD and part of the way they release their energy is to fidget or to shake their leg or to tap or something. And that can be really annoying and cause distress for a person with misophonia, but if the person with ADHD can't do that, then that either it's really hard for them to not do it, or it causes problems for them if they're not able to release that energy. So then it's about working out: “What are our competing needs?” and having a conversation about how we work that out, how do we prioritize in any given moment which need is more important? And what systems do we need in place so that both of us can be relatively comfortable, and what are the times where we're willing to compromise?
HZ: I think if I had raised with my family, “There's a thing that makes me uncomfortable,” they would have just done more of that thing.
JANE GREGORY: Yeah, and that's been the experience for a lot of people with misophonia, is that as soon as they say, this really bothers me, it upsets me, I get a fight or flight panic kind of reaction, people automatically do the sound, or start deliberately doing the sound around them to annoy them. And that makes a bit of sense in a sort of family situation with siblings trying to torment each other, but for a lot of people it still happens, even as adults, like people in the workplace doing things deliberately to bully them, basically to cause a reaction and finding that funny. That's one of the things when I was talking about theories before: there's always scope for a theory to be true. So for me, if I think that somebody in my life is doing it deliberately, if it feels like someone's doing it deliberately, it's probably not true, because most people in my life don't want to cause me harm. And so if I have that feeling, I know it's probably not really the best theory to explain this situation. But for somebody who has been through that experience as a kid, or goes through that experience currently, then of course that is true for them, and then the solution is not, “We need to update the theory.” The solution is, “What do we need to do now that we know that that is the situation?” And that's then more about learning how to set boundaries, learning how to problem solve, and put systems in place that stop that from happening, rather than changing your interpretation of it.
HZ: So one listener says, "My mother has misophonia and always got really angry at certain sounds, like chewing gum or hiccups, And that anger always seemed unfair to me, since hiccups are, by definition, involuntary. I feel like she manages it better now that she can identify it as misophonia, and I do too. Does Jane find that common? That when people can name their reactions as misophonia, as a condition or the way their brain works, it helps diffuse the emotional part of the reaction?" And I'm going to throw in, conversely, does it make it worse for some people because they start noticing things even more?
JANE GREGORY: I would say yes, absolutely, for a lot of people, having a word for it, having an explanation for it, does bring down the intensity of the emotion because it puts a stop to what it felt like. When you didn't know what it was, without realising it, your brain is trying to make sense of it. So your brain will come up with a theory, even if you're not trying to. And so often, the theory was "There's something wrong with me that I'm getting angry at the people that I love," or "There's something wrong with them that they keep making these sounds, even though it's obviously upsetting that they make these sounds."
And so what misophonia does is it brings in a competing theory, which is, "Oh, my brain works a little bit differently from other people. And therefore I can't filter out some of these sounds. And therefore it's not about me. It's not about them. This is just what my brain's doing." And there's something comforting in that, because it's better than the theories that you had before.
But for some people, once they know what it is, they then start worrying about other things that might cause a problem. "Now that I know that my brain reacts this way, what if it attaches itself to other sounds?" And so when they hear about trigger sounds that bother other people, then they start listening out for that sound. And not in a deliberate or conscious way, but that's just what their brain does, partly because they're worried about the impact of this problem that feels like it can't be changed. But I would say it's more in the other direction, where people feel a sense of relief and comfort at having a better explanation than the one that they came up with for the way that they were acting.
And one of the things with misphonia is actually that those theories are in competition with each other, so you feel both that the other person is doing this and not caring about the impact that it has on you, and you're feeling like there's something wrong with your body or brain: you're too sensitive, or you're controlling or manipulative. And those two things - they can't both be true, but they both coexist. And so there's a lot of conflict going on with misophonia. Whereas once you have an explanation that doesn't involve conflict, that relieves the intensity of the reaction. The conflict is just another layer of the reaction that increases the intensity of the misophonia.
HZ: If there's one piece of advice you can give to people who maybe have not made a start yet on their misophonia management journey, what would your advice be?
JANE GREGORY: One piece of advice. Oh man!
HZ: Or, what's one of the things that you are most grateful to have learnt in the years you've been studying misophonia?
JANE GREGORY: I think the biggest piece of advice is to give yourself a break, but also give others a break, and that most of the time people aren't trying to cause harm to other people. I don't quite know how to finish that statement, because I also don't want to invalidate the fact that people do have experiences where people are very much intentionally trying to cause harm to that person, so everything comes with caveats. Actually, the thing that was most important to me was discovering that I wasn't alone. I wasn't the only person reacting this way. Once there's a word for it, that means that other people experience it too. I wasn't alone in this experience.
HZ: Buy Dr Jane Gregory’s book Sounds Like Misophonia wherever you get your books. Because it’s laid out like a course of therapy, if you do have misophonia you can work through it by yourself or with your therapist. As a non-misophone I found it very valuable for learning how to be more supportive of, and less of a problem for, people who do have misophonia.
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Your randomly selected word from the dictionary today is…
obelize, verb: mark (a spurious or doubtful word or passage) with an obelus.
What is an obelus? Conveniently that dictionary entry is right under this one, so here you go:
obelus, noun, plural obeli: 1. a symbol † -
- the one that looks like a little dagger -
- used as a reference mark in printed matter, or to indicate that a person is deceased. 2 a mark (- or ÷) used in ancient manuscripts to mark a word or passage as spurious or doubtful.
Origin Middle English via Latin from Greek obelos 'pointed pillar', also 'critical mark'.
Same root as ‘obelisk’! Try using ‘obelize’ or ‘obelus’ in an email today.
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