Welcome to Sheeper Assisted. I'm your host Sadie Sutton, a 19
year old from the Bay Area studying psychology at the
University of Pennsylvania. Sheeper Assisted is the teen
mental health podcast made for teenagers by a teen.
In each episode I'll bring you authentic, accessible and
relatable conversations about every aspect of mental Wellness
you can expect. Evidence based teen approved
resources, coping skills including lots of DBT insights
and education, and each piece of content you consume.
She Persisted offers you a safe space to feel validated and
understood in your struggle while encouraging you to take
ownership of your journey and build your life worth living.
So let's dive in. This week on She Persisted.
The therapist and the patient are working together, moving in
the same speed, same direction. Like 2 trains leaving a station
on two separate tracks. Are we going the same speed in
the same direction to the same next train station?
That's therapeutic alliance. It's that real shared
collaborative. We're doing this together to
humans, to flawed humans, therapist included, right?
We're going to help you figure out how do we get there
together. Hello, hello, and welcome back
to another episode of She Persisted.
I'm really excited for you guys to listen to this one.
I went in person to interview Doctor Rosenthal and Grace at
the Duke Center for Misophonia and Emotion Regulation, and we
talked about everything you could want to know both with
emotion regulation and misophonia.
Dr. Zachary Rosenthal is an expert in DBT and misophonia
research. He is a clinical psychologist at
Duke University and Grace Hepps is the outreach and education at
their lab. And so we talk a lot about her
lived experience, how you can support someone struggling with
misophonia and how the treatment and research landscape has
changed. We start by talking with Doctor
Rosenthal about emotion regulation, emotion
dysregulation, how this shows up in DBT, what the cycle of
emotion looks like because it shows up in a lot of different
ways, especially misophonia and people that find DBT to be
effective. So if you were interested in
learning more about emotion reactivity, regulation,
recovery, DBT, misophonia, all the things, this is an episode
you will absolutely enjoy. And if you guys haven't heard of
misophonia, I'll give you a quick little definition that we
do touch on it in this episode. It's a chronic condition that
causes people to have extreme emotional reactions to specific
sounds. So we talked about why we have
different emotional reactions to things, how we can cope with
them, and then also specifically with misophonia, which is a new
area of research and is a really interesting way to apply a lot
of this knowledge, knowledge about emotion regulation and the
emotion cycle itself. So I really hope you guys enjoy
this conversation with Doctor Rosenthal and Grace.
I had an incredible time recording it.
And so with that, let's dive in. Well, thank you guys so much for
joining me today. And she persisted.
I'm so incredibly excited to have you on the podcast and to
talk about DBT and emotion regulation and misophonia,
Really important conversation that we were talking off air
that not a lot of people are having, but I think a lot of
people could benefit from. So I'm really excited to have
you both here today. It is wonderful to be here with
you, and what a pleasure to be in person.
Yeah. At Duke, Yes.
Thank you for coming here. We're coming to you guys from
North Carolina, which is different from my normal
podcasting setup in Philadelphia.
So exciting, and I'm just so glad to do this.
So to get things started, I wanted to start with kind of
laying a bit of a framework for this episode, which is that
we're really talking about emotion regulation.
And with that comes reactivity and recovery, which is a very
complex topic and it's something that we all navigate and go
through, but we probably don't have the vocabulary or
understanding to be like, here are the phases that I'm going
through when I experience an emotion or I'm in a stressful
environment. And so I was wondering if we
could give that insight and definition to listeners about
what that cycle and process looks like when we experience
emotions, why we experience them differently, how we regulate
them and then what that looks like after the fact that like
recovery cycle. Yeah, absolutely.
And I'll do my best to not sound like a really boring professor
doing this, I promise. And I may fail.
Apologies in advance if I do. But here's the thing.
All responses we have in the world always start with sensory
input. We always do.
Everything we experience starts with what we see or we smell or
we taste or touch or what we hear.
And what happens is that our brain super complicated organ,
probably roughly around a 3 LB organ and its basic function,
boil it all down, is survival. So what our brain is doing and
taking in sensory information is it's trying to make sense of it
in a way that gives it gives us an idea about how to respond, to
stay away from danger, to stay away from threat, to kind of
move through the world in a way that feels safe to us.
So this is the first thing to understand.
It's like there's a lot coming at us every single day, all
sorts of sensory input. And that's the trigger, if you
will, we're in how we make sense of the sensory input, which we
could think of as our thinking. So that sensory input plus the
way we make sense of it together is going to impact our biology,
our body, and I mean throughout our whole body.
Our nervous system is way complicated.
There's lots of moving parts and what happens is the sensation,
the cognition, all this stuff comes together and poof,
instantly, like milliseconds, instantly we react.
And what we call that reaction, we call it an emotion, right?
We say, oh, I'm having this emotion.
The emotion itself is a word, and it's a word we learn.
It's a word we learn from the way we grow up.
So people from different parts of the world have some different
emotions that they might experience in similar
situations. So it's actually really, really
complicated. But what happens at the end of
the day is we get emotions throughout the day, every day.
We react, we have them, we experience them.
Now we may not be aware, we may not put good words to them, but
we have them. Sometimes they're small,
sometimes they're big, and they last just a few seconds.
This is a wild thing. Emotions last seconds and then
they sometimes get triggered again.
Now they last more than a few seconds.
And now you start stringing them together with more and more and
more firing of emotions. And now we start having minutes
of emotional experiences or hours even.
Some people might report days of experiencing this.
And now this is where we really start to see struggle and
distress and so on. Whether we're talking about
shame, fear, anxiety, disgust, sadness, etcetera, etcetera.
Now the emotions there, it's intense.
How do we cope with it, right? This is the real key in
understanding once the emotion is triggered and we react, how
long it takes to come back down to where we started is mostly
going to be due to how we regulate how we regulate and
that is a complicated next stop. Yeah, I think there's this
misconception, especially when you're struggling with your
mental health, that the way you quote, UN quote should be
experiencing life is like no emotion or very little emotion
or maybe just positive emotions. That idea that if you were
regulating your emotions properly or you could better
tolerate your distress, that you wouldn't be having those initial
experiences. And I think that's not
necessarily the case. It's absolutely wrong.
It's completely wrong. Emotions are there for reasons.
Evolutionarily speaking, they make sense.
They make total sense. Again, our brains and our
bodies, they're they're engineered really, really well
to help keep us going, keep us alive, keep us moving, keep us
out of harm's way. And so when we feel an emotion,
it's a signal means something and we need to kind of recognize
what that is in the moment, try to make sense of it, which is
hard, hard to do. That's a big part of emotion
regulation. Try to make sense of what does
that mean about what I'm experiencing.
And it's a kind of self validation.
You think about it, it's like it's the emotion itself is a
communication to you about what's going on with you in that
moment. So we got to listen to it.
The other thing that emotions do that's really important, whether
we're talking pleasant or unpleasant or whatever, not only
do they tell us something, but we use the emotions to tell
other people things. So emotions function as
communication to others. Faces communicate our fists, our
shoulders, our hands, the way we hold our bodies, our words, all
of it communicates to others. And we need that to be able to
function, right, to be able to have the type of relationships
and day-to-day functioning that they all are striving to have.
So then the third piece that emotions do is they motivate,
right? They motivate actions.
They motivate. If we listen to our emotions,
they motivate us to do something.
Now, is that something skillful and effective or is that
something that might get us into trouble?
That's a whole other distinction to make, but they motivate us.
I think it's a lot of people, when we think about emotions,
our mind immediately goes to ways when they're being
ineffective. Like when we think about
struggles with emotion regulation or emotion
dysregulation, we think about these really extreme examples
where maybe that's not going how it should be.
And maybe that's populations that DBT is really effective
for, whether it's borderline crystality disorder or
depression, anxiety. In some cases, it's not so much
that day-to-day cycle that you talked about, which is that our
emotions come up, they're telling us something.
We probably respond to that single signal hopefully
effectively and then we regulate the emotion and it's kind of
just passes without second thought.
But we do have these individuals and populations where that
doesn't happen effectively. And like you were saying, maybe
the emotional signal is lasting for hours or days where it's
more consistent. I don't want to say something's
going like quote UN quote wrong in that situation, but it's not
that typical cycle that maybe most of us experience when we're
just navigating our day-to-day lives with these smaller
stressors. So when we think about that
reaction regulating recovery, at what point is that cycle not
being as effective as it could be when we see this extreme
emotion dysregulation? Yeah, that's a really good
question. And probably different for
different people, right? And different settings for the
same person. What, what's complicated about
emotion and emotion regulation is that there's a whole bunch of
other intersecting processes that come together to give us
what we call emotion or emotion regulation.
And so someone might be really distressed and, and having a
really, really hard time functionally.
Maybe they're like not hanging with their friends or they're
not able to go to school or, or do well in school, or maybe
they're having a hard time with their family and, or work,
whatever. So there's there's this kind of
impairment is kind of like jargon we would use.
And in my world we'd say there's impairment with day-to-day
functioning that's consistent and it's related to this really
intense big overwhelm set of emotions.
But here's the thing, inside of those emotions, there's a whole
bunch of other stuff that we can help people try to unpack and
understand to change all of that.
So whether it's what they're attending to with their
attention or whether it's what they're automatically doing with
their actions before they get triggered, anticipating they're
going to be triggered, or whether it's when they do
respond to some sort of really kind of intense emotional type
of situation, what are they doing with their actions, right?
Are they approaching? Are they avoiding?
Are they escaping? Are they confronting?
Are they right? There's all these sort of
behavioral things that we can help people with.
What are they thinking before, during, and after the emotional
stimulus, if you will, before the thing triggers them?
What are different types of thought processes?
Because we can help people change those.
There's really good evidence based ways, as you know, to
change patterns of thinking and that can be before somebody's
triggered, while they're in that intense distress, or after.
We also can help people with how they communicate again, before,
during and after. And those communication patterns
also, if they change, can change how people think or what they do
or how they feel. And then lastly, we have what's
going on in people's bodies, right?
So that of course, also can be something we can target changing
before, during, or after a trigger.
So I think it's really interesting because all these
things come together kind of like in a network, kind of like
holistically, right? Like what you feel, what you
think, what you do, what's going on in your body, how you
communicate. Those things are not separate
from each other. They're all interrelated.
And so if you change one, you can actually change some of the
others, all in an effort to regulate.
You mentioned different interventions that we can do to
be more effective or target these things.
DBT or dialectical behavioral therapy is a big one for emotion
dysregulation and distress tolerance.
I would love to talk to you a bit about training process for
that because what makes DBT really unique is that if you're
doing like DBT adherent treatment and you're working
with someone who's gone through the training process and they
have their board of clinicians that they're working with,
you're going to group, you're going through the different
phases of treatment. Your outcomes are pretty
consistent statistically versus when you go to a normal
psychotherapy appointment. The number one determinant is
your relationship with that therapist, which is really
interesting because DBT does lean so much on that skills
group part of things and these things that are really set in
stone, whether it's phone coaching or we start with phase
one, like there would be interfering behaviors or life
interfering behaviors, and work through this hierarchy.
What is it about the training process and what are you guys
doing to lead to those outcomes that are so consistent and
adhering to this original protocol?
Well, the number one thing in my opinion with training someone in
DBT is, and I've been training people for decades.
I train people around the world, in China and in the US a lot in
North Carolina and here at Duke. I've done this for a long time
and trained a lot of people. And I think the number one
thing, if I take a step back with this question, it's really
about helping people have and express compassion from the
heart for the person in front of, but to do that in a way that
is aligned with principles of behavior change, including
acceptance based and change based strategies for change.
So I think it's actually a false distinction to say that there's
either, you know, kind of the relationship that accounts for
outcomes in psychotherapy or there are things like skills or,
or in DBT or other treatments. I actually think it's it's both.
It's definitely and go figure, I'm dialectical here.
So on the one hand, there's this, on the other hand, there's
that. The way I tend to think of
things is how do we integrate and synthesize so we get a both
and here instead of an either or.
And the both end is that that's what we're trying to train
people to do, right? It's to really have strong
therapeutic relationship in a DBT context, strong therapeutic
alliance. And then the third piece is
strong ability to do these really specific kind of DBT
principles and skills and so on. That's like a three tier layer
cake or a three layers to a cake.
The relationship is not the same thing as alliance.
Alliance is the degree to which 2 people, the therapist and the
patient, are working together, moving in the same speed, same
direction. Like 2 trains leaving a station
on two separate tracks, right? Are we going the same speed, in
the same direction, to the same next train station?
That's therapeutic alliance. It's that real, shared,
collaborative. We're doing this together to
humans to flawed humans, therapist included, right.
We're real people, but we we're going to help you figure out how
do we get there together. And that's on top of this
really, really strong, compassion driven, humane,
deeply humane relationship that's expressive training
people on how to do that and honestly how to get out of their
own way to do that really well. That leads to therapeutic
alliance. And then our third kind of the
covering of the cake, if you will, what you see, the icing
that the flowers, the happy birthday letters, right?
What you see on top of the cake, that's the skills, right?
That's the like, let's do a chain analysis and let's do,
dear man, and let's do the stop and the tip skill.
But that stuff's necessary too. But your question is about
training. I want to train people who want
and really deeply care about others they want, they want to
learn how to how to channel that in a compassionate way that also
includes using these evidence based strategies.
It's not either or, it's both. Can we talk about some of those
principles? Because I think people that have
been in traditional psychotherapy versus when you
enter DBT therapy, it's like a very stark difference.
And I think that idea of teamwork is very clear.
Your first session you're like, wow, we're all in this team
together. They're in my corner, which for
a lot of patients, you're like, I've never felt this way before.
You get to the session and they're like, OK, we got to
change this behavior and DBT, it's like, what do you want to
work on? What are we focusing on?
And obviously there's some like better kind of work on this so
we can get to that later thing that you want to do.
But there really is that idea of collaboration and I think the
compassion piece as well, which also can sometimes feel really
foreign, especially when your behaviors aren't making sense to
those around you. And I liked what you said about
getting out of your own way to be able to support someone
that's in a position that they're struggling.
I think that's relevant to parents, it's relevant to peers,
especially when you want to support a friend.
And there's these really specific philosophies that DBT
has, like the patient is doing their best, but they can also do
better. And you mentioned therapists and
people too, not? But.
Did I say butt? Oh, no hands.
That's the number one DBT thing, not butt the dialectic.
And so I'm wondering, are there any of those philosophies are
ways that people can be more compassionate and understanding
and open to get out of their own ways and support people that are
are struggling in a way that they don't necessarily
understand or it seems really out of left field or foreign?
Yeah, Yeah, that's a really good question.
There's a couple of things that come to my mind.
I love the question. I'll answer it this way first.
So the beating heart of DBT as a clinician, the beating heart
that I experience week to week is my team of therapists that
are the community of therapists working with me and I'm with
them and we're all working together in a way to try to
serve all of our our patients and clients, right?
So that beating heart of there's a community of people helping to
support each other. And when the way we do that is
we essentially do therapy for the therapist, that's what we
call it. So on our treatment teams, we
are doing mindfulness practice every week.
We are paying attention to how fatigued we are, how difficult
things are in our personal lives.
We are supporting each other. We're helping each other get out
of our own way of our own tendencies to do this or that,
right. So we have this group of
therapists that are really providing a type of love and
care for each other, and they're doing that in a way to help
support doing DBT by the book. The patient is not lost in this.
The patient is at the core of this.
But to help the patient, what we recognize is we've got to make
sure we are full, we are nurtured.
That's not a thing you see in other treatment approaches.
The reason we do that is because these are hard people to work
with and this is a hard treatment to do.
So we have to create structures around us to take care of us so
we can take the best care of the treatment and most importantly
patient. I think that's really important
and very applicable to parents and just the everyday
individual, that you can't help others until you can help
yourself. And you're going to be able to
support them more effectively if you done everything possible to
be able to get your needs met. And that you're not pouring from
an empty cup, which is common. That's right.
We have to be aware because we're flawed humans.
We're just clinicians, right? We're just people.
We're, and this is a DBT way to think and talk about this,
right, that we are people with some expertise.
That's true. But we also are we're, we're
real people. We have our own lives and our
own stuff. And we want to make sure that we
don't let that get in the way. So when, when hard things happen
in our lives, we talk about it. I recently lost my mother not
too long ago and that's been really, really hard.
I was really, really hard losing my my mother.
I talk about that with my team because I don't want that next
patient who has anything that reminds me of my mother.
I don't want any of that to interfere with care for that
patient. And it might still anyway, but I
want to try to make it be as kind of above board and, and
help me be as aware as possible about that.
So again, we're paying attention.
We're looking out for each other and parents listening, you know
the one I'm about to say is true because you've struggled with
this when you are trying to find care for your teenage kids or
your grown kids or even your late childhood kids.
If you're trying to find care that is DBTDBT based, you know
how difficult it is to know the quality of the clinician by
looking at a website, you know this, you know, this is really,
really hard. So here's a hack.
A trick is you can ask them if they're part of a DBT therapist
consultation team. You can find that out.
And the answer is not going to be maybe it's going to be yes or
no, right? And those that are, are likely
going to have the type of support around them that is DBT
and is part of really truly doing an adherent full model DBT
program. The vast majority of those
people in America and I would say probably everywhere who say
they're doing DBT are probably just doing DBT group DBT skills
training, which quite frankly is the least DBT thing about DBT.
Just the skills. Literally Marsha, when she made
the skills she collected, like it's like she took a basket and
walked around the world and picked up skill after.
Yeah, attachment theory. Does anybody think that Marcia
invented mindfulness? I mean, this is, this is like
really, truly like a, we could say what we want about it, but
it's like it's a 3000 year old practice.
She didn't make it up. She's taken it and she's made it
secular to some extent, still Zen Buddhist to some extent, but
she's really secularized it, modernized it, put it into a an
evidence based psychological treatment.
She didn't make it up. She didn't make up chain
analysis. This is behavioral analysis.
This is stuff from the 1960s. Police skills are not new police
skills. We have health.
Yeah, like, so you got to kind of like, think about the skills
themselves are fabulous. They're skills for probably
everybody. Yeah, I use the skills
regularly. But skills alone are not a way
to live every day. It's certainly not well, maybe
more specifically distress tolerance skills alone are not a
way to live every day. These some skills like the
distress tolerance skills, these are good in certain moments, but
we wouldn't like every day want to live just doing stop skill
and you know, tip skill all day long.
Not such a rewarding life. So take away here is that the
skills themselves are probably what you're most likely to find
parents listening and patients listening.
And they might be really, really helpful.
They can be helpful for anybody. But if what you're looking for
is sort of full model DBT, ask if the therapist is on it.
Therapist consultation team. We touched on this a little bit,
but I want to circle back, which is that a lot of these ideas
aren't new, like having a lot of compassion for the patient and
working together as a team, and these skills that come from a
lot of different psychological theories.
These aren't brand new ideas and yet it was kind of revolutionary
to see these kinds of outcomes in this demographic.
And you've done some work on this, but there's this mechanism
of change that's taking place here.
And so I'm curious, obviously it's going to be a dialectic and
a number of things, but do you feel strongly that it's like
that therapist patient relationship?
It's these basic beliefs and principles we talked about, like
these dialectics that are at the core.
What you kind of see is that mechanism for change that makes
DBT so different for so many patients compared to trying the
skills by themselves at home or just working with an individual
therapist. I think it I'm going to answer
this two ways. The first is simpler, which is
that it's the ability to live your life with more intention,
more purpose, more awareness, and more flexibility, which
means lots and lots of things. But that's the short answer,
right? It's that ability to do all of
those things. A longer way to answer your
question is that I think it's the wrong question.
And what I mean by that is that I don't think there is a
mechanism across all people. I think that that's actually not
the way to think, the way to think about it.
And the question to ask is for which people are which
mechanisms of which treatment most likely to be helpful and
why, right. So if you, if you approach it
from that framework allows you to look at each person a little
bit more flexibly, a little bit more like really truly treating
each person differently and understanding how people really
are different and their patterns are different, their backgrounds
are different, their traumas are different, their family
histories are different, their brains are different, and so on
and so on and so on. So much is different.
So much is so different about each person.
So what may help one person really change in DBT may not
actually be the same mechanism, singular speaking as the next
person. And that's OK.
I think we can look at mechanisms at different levels.
So there might be interpersonal mechanisms, there might be more
physiological mechanisms, there might be more behavioral, there
might be more attentional mechanisms.
All of these things, if we boil them down to 1, I think come
back to like being more flexible, more skillful if you
will, to use DVT language would be more flexible from a place of
intention and awareness. We talked about trying to be
compassionate with behaviors or feelings that we maybe can't
empathize with. We can sympathize and that I can
see you're really struggling. I can see you're in a lot of
pain, but I don't understand it. And then it's challenging to
take that compassionate lens and as a peer or parent or a
therapist, be a team member and help someone work towards this
goal or working towards maybe like phase two or phase three or
whatever it is. And I think an example of that
is suicidal ideation. A lot of people don't understand
why people are having those thoughts or what would cause
them to think that way or why that's the response to their
environment, that they're maybe living in the same environment
as someone else. And so I'm curious if you can
unpack that a little bit and explain, especially from the
emotion regulation piece, why there is that strong
relationship between struggling to regulate emotions and then
suicidal ideation, which a lot of people don't experience in
their lifetimes. There's a lot of confusion and
misunderstanding. Yeah, when somebody has
extraordinary suffering, they imagine doing anything they
possibly can to stop it because it's so extraordinary.
I mean, the experience of being deeply in what feels like hell,
like really, truly feels unbearable, leads one to imagine
what they can do to stop it. And when each successive attempt
to try to stop it, solution after solution does not seem to
stop the pain, ultimately the person starts to think about
ending their life as a type of way to end.
And it so becomes this imagined solution.
And what can happen for some people is that even thinking
about this solution, even thinking about harming
themselves, thinking about killing themselves in the moment
they do, that can take the edge off of the emotion they're
feeling in that moment. And that's relief in that
moment. And that means in a more sort of
jargony way, it's negative reinforcement.
It's the reduction of something unpleasant.
And anything that reduces something unpleasant for us is
likely to be reinforced, meaning it's likely to happen again and
again. It's the reason why when we shut
our doors to our cars and the annoying Ding Ding Ding Ding
Ding happens with our seatbelts, what do we do?
Put on our seatbelts. We put on our seatbelts.
Yeah. Why?
In that moment? Why?
We stop the annoying, distressing stimuli.
It's just that, yeah, it's exactly that.
So you can think of suicidal ideation or suicidal behavior as
a behavior, even thinking you can think of it as a type of
behavior that has a function that actually works in the
moment that actually really does work.
And therapists that seek to understand that and lean into
that with compassion or they might be good DBT therapists
because that's really dialectically how we might think
about it. It doesn't mean we're going to
support it or want it or, but it's about it understanding and
acknowledging the function. The reason why this is happening
is it has some effect that works, so it's going to then
happen. Shifting gears a little bit into
misophonia and people listening to the podcast who are
interested in mental health and engaged in some way online
probably heard of misophonia before.
It's becoming more popular and more mainstream for people to
talk about. We hear these conversations
online. This is where people are getting
their information, and we sometimes have misinformation
because we're not coming at it from a research lens.
We're not coming at it from really trying to understand what
we objectively know about the lived experience and also how we
can break it down and understand it in more of a research
context. So I'd love to understand what
the current definition of misophonia is and also how that
shows up in the day today so we can shift.
Sure, sure. So misophonia is a recently
defined disorder of decrease sound tolerance, but it's really
more complicated than that. You can think of it as an
unusually strong reaction, unpleasant reaction to really
particular sounds and other cues or stimuli that are related to
those sounds. So the word translates literally
into dislike of sounds. And that's kind of what it is.
It's this strong reaction to particular sounds.
Now the the sounds, we often call them triggers, even though
I don't love that word. That's just the word that's
used. And typical triggers are mouth
or nose or face kinds of triggers.
So sneezing, snorting, chewing, crunching, lip smacking, eating,
swallowing, slurping, sniffing, throat clearing.
Apologies to anybody out there that's getting a reaction even
to those words. I know.
It's like there's a lot of them, a lot of.
Them it's odd they tend to break down into no to to noises that
people make repetitively in their nose or their mouth or
their throat. And there are other, there are
other trigger sounds that are common that are not nose or or
mouth or throat, pants, clicking keyboards, typing, environmental
noises that are repetitive. But in the research studies of
people with misophonia, most of the people report having among
their primary triggers eating sounds, chewing sounds and or
any of those nasal or, or throats.
Yeah. And the reactions, these sounds
vary quite a bit. But the way you can think about
it is that this is not being bothered by sounds.
This is an extreme reaction. Think of it this way.
It's kind of like, you know, if you're listening right now and
you're kind of tuning me out. Here's the thing.
Think about this, you feel anxiety sometimes.
Most everybody does. If you never feel anxiety,
there's maybe maybe something else we should talk about,
right? But everybody, everybody feels
anxious from time to time. And that's probably good.
But not everybody has an anxiety disorder, right?
We can do the same thing if we want with depression.
We can say most everybody could say they've felt sad before.
That doesn't mean you have major depression, right?
Some people think about things a lot, they might obsess, but that
doesn't mean they have OCD, right?
So misophonia, think of it as sort of like that.
It's the extreme end of sound sensitivity, where the
sensitivity leads to really strong and very distressing and
very, very impairing reactions. The reactions are anger,
irritation, disgust, anxiety, really a wide array of different
negative emotions. The emotions are hard to
regulate because they're unwanted, they're automatic,
they're intense, they're disabling in the moment.
The student can't focus in class.
The students not being manipulative, they can't
actually focus. And there's research studies
that have looked at this, that in the brains of people with
misophonia, when they're triggered, they lose the ability
to learn, to pay attention, to remember, to do the kinds of
things we want people to do when they're in classrooms.
So these triggers come, they elicit these really big
reactions and responses in the brain, in the brain and
throughout the nervous system. And that can then lead to
behavioral reactions, often needing to leave the room to
escape, to avoid or to confront somebody or to seek out that
sound source and try to understand it.
If you're still not clear what I'm talking about, these are the
people who look at you sideways on the airplane or the bus.
They look at you sideways. When you open up that bag of
potato chips and you start crinkling that bag and you pull
up that potato chip and you put it in your mouth and you make
that crunching noise. These are the folks that might
look over at you and there's daggers coming out of their eyes
because they're really intensely triggered.
I mean, this is not a dislike. This is really really unbearable
nervous system reaction that is automatic and really really
distressing. I would love to hear a little
bit about the lived experience of that.
We have an objective definition of how that can show up, but I
imagine one of the biggest areas would also be interpersonal
relationships because a lot of those triggers are outside of
your control and you have to employ some relationship skills
to be able to alleviate the distress or get out of that
situation. I'm sure there's a lot of
setting intentional boundaries, but how does that show up in
your day today? With regard to gauging in
relationships, things like class, like you guys mentioned,
is a really big factor. You can imagine things like
eating out or going out with friends.
Can you speak to that a little bit?
Yes. So I've been reflecting on this
a lot in the past week because we got the chance to go to the
Misophonia Research Fund meeting last week.
And it was funny for it to hear you say that.
Like if you're online and you've probably heard of this thing
that was. I never thought I'd hear that
sentence in my life. Maybe I'm too deep on TikTok.
But, but I think that it the awareness is increasing so
rapidly like I so I'm I turned 23 today.
Another reason why I'm reflecting a lot is because I
started at 13 is when I started to experience symptoms of
misophonia. So it's been 10 years now and
back then that wasn't in our vocabulary.
And eventually my mom, my older sister found that word out.
And when you look it up, everything is negative.
It's parents blogging about how their child is suffering so much
and they can't do anything. So I actually refused to look up
the word for years because there was nothing positive.
It was you're getting no help. And I can't believe how fast
that is changing right now. And when we went last week,
there were 21 studies being presented, ongoing studies.
And I, I cried several times during the meeting because I
couldn't believe that there was so much work being done.
And all around the world, too, there are people from Poland
there being studies being done with people in South Korea.
It, it was just, I couldn't believe it, something that I
didn't think I would see and not within 10 years at least.
And I just can't believe that hearing you say like, you've
probably heard of this. Yeah, it really does blow my
mind. And I'm so grateful that people
are finally learning what it is. And I get I don't have TikTok
but my friends send me the links to them all the time and people
whenever someone just miss a phone yet my phone blows up
because everyone I know sends me that TikTok.
And it really does warm my heart that people are finally finding
out and I've talking about relationships.
Something I've been thinking about a lot recently is the
relationship I had with my parents.
And we spent years going to different doctors.
I grew up in New York. We would drive in Jersey and
different parts of the state just to find someone who could
help me. And it was a nightmare.
I would go to these doctors and they would be asking what
misophonia was and I would just immediately break down the spot.
And I would get upset with my parents because I feel like I
need to put the blame on someone and I would be upset.
Why are you bringing me to these people?
And they don't even know what this is.
And I have to, I'm, I'm a child and I have to explain this to
them and I'm asking them for help.
And why are you bringing me to these people?
And looking back on it now, like I have so much empathy for what
my parents went through during that time of they just wanted to
help me. And I was so frustrated.
They were too. But there was nothing there.
There was no one saying we can help or if they were, there was
no evidence behind it. And I really feel for my mom and
dad looking back now and it's hard to see it in that moment
when you are dealing with so much.
And I was so overstimulated all the time of trying to.
I couldn't even. I wore headphones all the time
in my own home because my walls were thin.
I shared a room with my sister until I was like 15 and I felt
like there was no escape and that definitely affected my
relationship with my parents because they're also my biggest
triggers. I can't even hear my dad
breathe. It's really hard to be in the
same room as my parents unfortunately if there's not
some sort of background noise. And I love them so dearly and
they've done nothing wrong, but I can't stand in the same room
as them sometimes and going out to eat.
Growing up, I just felt like this annoying teenager because I
would have my headphones in and I'd be like in the corner of the
booth not looking at anyone. The waitress would come up and I
would like not even see them come up.
And I'd be like, they're probably think that I'm just
this annoying, bratty teenager listening to her music and is
having these hormonal changes. Is it being dramatic?
I'm the youngest of four as well.
So that was also something I heard a lot was get over it.
Like, what are you doing? When I would get upset at dinner
and one time my oldest sister said to me she was she's like 8
years older than me. So she was away at college for a
lot of this time, a lot of when the onset happened and didn't
really see my day-to-day difficulties as my other
siblings did. And she came home for a break
once and said you haven't gotten over this yet.
Even my other sister was like oh she shouldn't have said that.
So that even just getting that understanding within my own
household took a long time, let alone outside of it.
I was so afraid to tell anyone outside of my house.
The first time I told my friends I was at a sleepover with two of
them and they were eating pretzels and I just broke down.
I hadn't told anyone about it and they immediately were like
what is wrong? And it took me a while to even
get the words out and. They were so supportive and made
sure that they didn't do those things around me and that that
allowed me that experience because I was so afraid people
wouldn't believe me because there's there was nothing on it
and no one knew what this was. And it was just, it was
embarrassing and I felt guilty for telling people to stop
eating. So it's just something that
everyone has to do. And that's also something that I
would hear in my house too. And like, the very beginning
was, well, I have to eat. And my dad said that to me
actually last year and that it brought me back.
Like it's how devastating that time period was for me, really
came back to me in that moment. I'm like, I got this like rush
of just, Oh my God, of me being kind of grateful that I don't
experience that day-to-day anymore.
But also like it is so frustrating to hear things like
that. And someone asked me last night
actually, well, what's the difference between just being
annoying and I was in a social setting.
And I feel like I've been because I work here now, I'm in
the setting where people are understanding me and I don't
have to explain myself to people.
And I just kind of shut down because I felt like my 13 year
old self again of not being able to explain things and feeling
like no one's going to believe me.
And I'm just so grateful that the research is happening and
that people are hearing this word now.
And sometimes when I ask people if they've heard of it, some
people are saying yes now and they never did.
They never did. I always had to explain.
Or at least they're like, oh, it's something with sounds
right. And then I'm able to build off
of that. But it's really, really hard
day-to-day and having to decide what social events I'm going to
go to or how I'm going to handle them.
And even going to a meeting yesterday here, knowing that it
was going to be during lunch and having to decide whether I was
going to risk going down there. And I did.
And it was hard, but I knew that I had the option of walking out
if I need to because I'm an understanding environment.
But in other situations, it's not like that, where you feel
like you have to explain yourself and just feel like no
one's going to believe you. Yeah.
When I was in high school, there was a class that I was in and
one of my classmates was given permission to eat their lunch.
And I told my teacher like I need to leave because I had a
five O 4 plan to be able to leave if I needed to.
And he looked to me in the eye and said, do you actually have
to? It's like whoa.
Allowed to ask. Yeah, that was that was wild.
And I went home very upset and my mom sent this like 6
paragraph e-mail to all my teachers and she said if one of
the kids in your class had a peanut allergy, you would not
let someone eat peanuts. I'm not going to go into
anaphylactic shock, obviously, but I am suffering when I hear
those sounds. I can't, it's debilitating.
I can't pay attention. What's the point of me sitting
there? And it's so harmful.
And I remember when my memories actually of the onset are very
foggy because it was such a dark time for me and very confusing.
And I just remember sitting at the dinner table bawling my eyes
out, just not understanding why I felt so tortured just by
hearing my family And just this feeling inside my chest of like
I am in so much danger right now when I'm actually not.
And that it's, I just had the need to leave and I, I just,
yeah, it's, it's so hard to explain in the feeling in words,
but that I think danger is, is probably one of the best.
I, I once had a patient tell me that it's like having a grizzly
bear suddenly out of nowhere, unpredictably sitting next to
you. And in terms of how your body
feels, it's that really intense sudden surge of threat is
present threat. There's something and that's
what's happening biologically in the brain is the sound pathways
seem to be intersecting with the emotion pathways and eliciting
this really automatic overwhelming.
There's danger, there's threat, and then the threat reactions
behaviorally and cognitively follow.
Yeah, yeah. You mentioned headphones,
background noise. There were some things that were
incredibly invalidating as responses.
But you said more recently it's been different in a positive
way. What has been helpful as far as
boundaries being set, skills being used, even just having a
more nuanced understanding of the experience itself?
I imagine it's really helpful. What has been helpful in your
journey? I think the the validation of
even just being in the meeting last week of seeing so many
people working on it and that there are people putting in this
effort to help us because I think all of us felt so alone
for so long. And I think having those papers
being published and all these things and moving towards a
place where we can better understand it, I think does make
me feel better. And I think I also have
different expectations of people too.
And that applies to my triggers. And I think that's might be part
of why people get more triggered by their family as they expect
them to understand and. I also have no boundaries
though, siblings especially. It's like you don't expect a
decorum at the table. There's like you're not using
manners, so it's so much worse. Right.
No, you're right. So it is, it's that.
And I, I, I don't really know because I did go, I've gone to
therapy, but I don't really know if we use and like it wasn't
DBT. I don't know what I didn't find
it helpful in the beginning, but it was helpful to talk to
someone. And I think just over time,
learning to regulate my emotions as I grew up as well and being a
different environment and more understanding environments as
well. Like at work, I don't have to
worry at all because we're working with Miss phony people
understand. And at home, it's much better
now that if I need to step out, people aren't yelling at me or
judging me and aren't upset by it.
So I think it's it's still very difficult with strangers.
They trigger me less, but I still have that feeling of
embarrassed guilt. Yeah, Yeah.
I think DBT especially comes from this lens of like, you
always have the choice. And I think you have a more
nuanced understanding of that as you get older, where, yes,
there's things we have to do and we have to go through and be in
certain environments. But you do have a lot of
autonomy and choice over who you surround yourself with and the
boundaries you set and who you're choosing to put in your
circle to support you. And whether that's in high
school or college, you just have a lot more choice there than I
think we initially think. Especially because as we're
younger, so many of those relationships are defined for us
and parents and siblings and family, friends and classroom
you're in. But you really do have a lot of
autonomy to build that community to set you up for success.
And I think that that's also the difference is I'm so much more
in control of my own life right now.
I don't live in the same home as my my family members now.
And college, like you said, you can choose your friends.
High school you're like. Told where to go.
You're told where to go. You have this set schedule every
single day and you have to ask go to the bathroom.
Like there's these set rules that you have to follow and
you've been following them for 13 years.
So it's it's much more structured and you have no
control over it. So that's also a really hard
part of being a teenager is feeling like you have less
control over things. But I hope that there will be
more education and people will be able to allow teenagers to
have more control over, especially with mental health
and misophonia, and accommodating them and making
their own decisions that would help them.
Absolutely. So two thoughts on this part of
the dialogue. 1 is that as people age, they tend to be able
to, generally speaking, kind of get a little bit better at
regulating emotions. It's really, really hard to do
that when you're a teenager. It's hardest probably in general
to do that when you're younger and you learn, you learn in lots
of ways and, and, and life hopefully allows you privileges
to help you be able to learn more easily how to be in control
of what you feel and who you're around and the environment and
so on. So all of that and, and
therapies you might do or whatever, you might do all sorts
of things to develop really good coping strategies to, to deal
with, with hard stuff. So that's generally true for
everyone. I think this question about
teens and misophonia and the environments, I really think
about this dialectically and maybe that's because I'm a DBT
person. I don't know, maybe probably
that's probably why I think about it this way.
I think that on the one hand, we probably do need to provide more
support, more structural support in school systems and in
environments. I mean, probably we need to
think about noise and noise generally for all people as an
irritant and as something that is a stressor.
And this is scientifically shown and lots of studies here in the
world that just noise, lots and lots of noise is kind of like
not great. Why?
Do we take tests and quiet because people need to focus?
Right, exactly. So I think on the one hand,
systems, whether there's school or whether it's work or whether
it's wherever, systems do need to accommodate better around
noise and around noise sensitivity for everyone,
especially for people on the tail end of this distribution
who have misophonia or other sound intolerance disorders.
So I think that's true. They do need to.
However, I think on the other hand, the person themself also
needs to accommodate the environment that they're in.
There's a little bit of a dialectical here is that we
can't expect the world to completely accommodate all
people with misophonia. That's just not realistic.
It's not, it's not realistic for anybody with any condition to be
accommodated by all people everywhere, all the time, right?
That's just not real. But we can strive in that
direction as long as we're balanced by and what can that
person do that's reasonable, that's feasible, that's
skillful, that's effective for them given their culture, given
their identities, given their context, right?
Given who they are, what can they do, right?
And I think that's, that's really hard.
That's a hard thing. And this is something that
therapists can help people sort through.
Therapists can help be reasonable and flexible.
And therapists can also support people with misophonia by
helping to write letters of support for them to, for, for
requests at school and accommodations and such.
So finding that balance and finding that that blend I think
is really an important way to to look at this.
Yeah. And you mentioned lame and shame
as being like those really strong initial emotions.
I think there's so much benefit and talking through those really
intense emotions, especially when they've been building up
for years. And therapy can be a helpful
setting for that because you don't move through those
overnight. And once you're back in those
dynamics or relationships, it can continue to arise.
And so even getting to that point of like, I want to
implement skills or I want to accommodate the environment
while also requesting that the environment accommodates me.
Having someone to support you through that process to even get
in that headspace is really important too and doesn't happen
overnight and takes a lot of work for sure.
You guys are putting out a lot of information and media and you
guys mentioned there's a lot of research still coming out, so if
people want to follow along with that or keep up with you guys
and your lab, where can they do that?
Our website www.misophonia.duke.edu and our
Instagram Duke Center for Misophonia.
Amazing. I'll put that in the show notes
and thank you guys so much for coming on the show.