Guest Post: I Have Misophonia

I Have Misophonia | Molly Mogren, Hey Eleanor!
By Hey Eleanor’s Molly Mogren

I’ve spent my entire life thinking I was absolutely nuts.

Ever since I was a kid, I’ve been ashamed by an issue I have with sounds. It’s without a doubt the thing I dislike about myself most. If a magical genie gave me three wishes, my first one would be to make the misophonia go away (I’d then wish for a billion dollars and for all pizza to be void of gluten and carbs, but still taste the exact same). From going to the movies to working in an office, this disorder makes daily life challenging.

I have misophonia. I didn’t know it even was an actual thing until a friend read this article in the New York Times and forwarded it to me. 

Molly, I think this is you

Whoa! That is me! I was relieved. Just knowing I had an actual thing was one of the best things I’ve ever heard. Pardon the pun.

I know what you’re thinking: what in the heck is misophonia? The gist: certain noises (in my case chewing, popping gum, humming, typing or clicking with a mouse) cause me panic and rage. And not in a “that’s really annoying” way.

It’s more of a I want to punch you in the face kind of way.

I literally panic if I realize I’ve left the house without ear buds (what if I have to sit by someone slurping at a coffee shop?!). Last week, I speed-walked away while yoga breathing and plugging my ears and shielding my eyes from the guy checking membership cards at Costco. He had the nerve to chew gum with his mouth open.

Like most people with misophonia, I first started experiencing symptoms around age eight. It began with food.

I hated hearing a spoon hit a cereal bowl, the muffled sound of a hand digging around a bowl of popcorn or popping gum. I know most people dislike those noises, but it would cause me to act out. Break things, scream, or avoid eating with my family all together.

Twenty-some years later, I’m still dealing with these same noise problems. In a lot of ways, they’ve gotten worse. My list of triggers continues to grow, and over the past 10 years, it’s moved from just sound, to sound AND sight. For example, seeing someone across the room chewing gum causes me to panic, even if I can’t hear them.

I know! It’s weird! However, 20+ years of this ridiculousness means my coping mechanisms are dialed in.

For example:

I almost always carry headphones, perfect for muffling noises at a coffee shop or a neighbor smacking gum on an airplane. I’d like to point out, if you have misophonia, airports are the absolute worst. Everyone chews gum at the airport.

I almost always have earplugs. 

My radio is always on, which helps muffle annoying noises.

I downloaded the White Noise app, which I play to drown out distracting sounds.

I purposely don’t spend time with people who constantly chew gum. I can think of three people right now that I love, but never want to spend time with because of their gum chewing.

I practice deep breathing techniques to calm myself.

I’ve mastered the art of subtly plugging my ears. I might look like I’m just casually resting my head on my hand, but no. I am trying to not hear you.

However, of all the things I do to manage my misophonia, the most helpful was meeting another person who has it. Long story short, the same friend who alerted me to the NYT’s story introduced me to her friend who also has misophonia. She’s normal and awesome and so funny and empathetic.

We live in different cities, but when one of us is having a particularly bad noise day, we will text each other. “My co-worker hasn’t stopped clearing their throat for six days! I’ve already cried twice in the bathroom today!” Just the act of voicing our frustrations is a HUGE relief. 

This is precisely why I am sharing my story. 

Though misophonia is a neurological disorder, there’s not a lot known about the condition and there is no cure. Some doctors speculate it’s a form of OCD, others believe it stems from some faulty wiring in the brain. What is known is that this disorder is real and it can be very debilitating. Hypnosis, Cognitive Behavioral Therapy and Tinnitus Retraining Therapy can help (full disclosure: haven’t tried any of these), but I also read just talking about it can ease misophonia. 

So here it is: I have misophonia. Whew!

I used to be afraid that people would make fun of me, purposely smack their gum, or write me off as hysterical or overly-sensitive.

Today, my fear is different: I don’t want people to feel self-conscious eating/breathing/living around me. I’m already aware that some friends and family do feel self-conscious, and it feels terrible. To be clear, I don’t have a fight-or-flight reaction EVERY time some one is eating around me. If I’m in a place with a lot of stimuli (a busy restaurant or fun party), I don’t notice a lot of the eating noises. 

I do, however, always notice the gum.

Always.

I can even hear it over the phone. Not so fun fact: The first thing I do when I walk into a room is scan it for gum chewers. If I see anyone chewing, I do everything in my power to not talk or look at them until they spit out the gum.

I can’t help it. It’s so dumb. 

Sharing my story is oddly therapeutic. I’m trying to get over that feeling of shame and embarrassment and I think this a step in the right direction. If you have other coping strategies or treatment ideas, I want to hear them! But if you could spit out your gum before commenting, I’d appreciate it. 

Image Credits: Hey Eleanor!


The daughter of a flight attendant and a hippy-turned-real estate developer who toured Europe in a Volkswagen bus, I arrived on earth with an undeniable sense of adventure. From hiking the Antarctic Peninsula, to outrunning a hyena in South Africa and even driving a street-legal monster truck through Des Moines, Iowa—I never turn down an opportunity to do something crazy. I’ve worked as Andrew Zimmern‘s right-hand lady since 2007; we’ve co-written three books together and co-host a weekly podcast called “Go Fork Yourself.” My latest project, Hey Eleanor!, chronicles my year-long journey of tackling one thing that scares me every day. I call Minneapolis home & am shacking up with my fiancé Josh, dog (Patsy) and kitty, Bogart. I love coffee, crossword puzzles and am very good at parallel parking.

You can find Molly here on Pinterest, Twitter, Facebook, and Instagram.


 

16 Comments

loughlin

personally i have misophonia but im to scared to tell people or point them out in fear of upsetting them or hurting their fellings. as said it`s a realy isolating felling and i only know 2 people that have it, one being my mum. i have gone to thereapy but apparently im “faking it” witch let me tell you is the WORST felling. my responses include eating, smacking lips, chewing, breathing, snortin and a spoon hitting a bowl. i also hate the mre sight of someone eating even if i cant hear it

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Carol

I remember my first experience with Misophonia, at the time I was only 8-12 years old. I don’t remember any really strong reaction to sounds until about 2 years ago. I am 67 years old. My triggers are intermittent sounds: usually compressors, heaters,clocks ticking,or air conditioners. I’m not bothered by noises made by people, that others mention.
I do avoid situations where I know I’m going to be hearing those sounds. It an isolating feeling. It definitely has changed my life in the last two years. I’ve just started with Sound Therapy and counseling. This is also combined with relaxation techniques.
It seems stress and depression brought a return of my Misophonia

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James

I have spent a great deal of my life resenting people for the noises they make, I would sit and become more and more disgusted and enraged at them until I blew up. I thought many people felt the same about eating habits so I didn’t look at it as if there was a problem, I thought it had more to do with being brought up by someone who would shout at me for the slightest noise I would make. I have known for many years that is irrational, it’s not our fault our mouths and bodies make noise, they just do. The sound of my step daughters feet sticking to the floor as she walks through the house, my wife walking in flip flops, the dog walking on the laminate and many other natural noises bring feelings of disgust and anger that I find hard to ignore. Mostly I can wait it out knowing that everything passes but there are times when I simply can’t ignore my feelings and it all comes out on in explosive rants and rages that have broken many relationships. Shouting close to me hurts my ears in such a way that the reaction is unpredictable. School was bad for me, bullied for being a weirdo, I was a constant disruption in class and teachers despised having my presence in the class. I left school thinking I was below average intelligence because I was, and am still, unable to take in information and retain it. Now I know, it has nothing to do with mental capacity and everything to do with being easily distracted by noise.
I try to remember that my problem with noise is not anyone’s fault, if my wife is eating and I’m feeling anything I know it’s not her fault, it ain’t even mine, it’s just something that will pass, I try to be less hard on myself for the feelings I have. For me though, sometimes the reaction is so inappropriate that I know I need help.
Understanding this condition will help me, lots more people now have a basic understanding of mental health than ever before so it is easier to be open and honest about stuff that affects us on different levels and I truly believe it’s openness that protects and empowers us. We aren’t mental, nor are we mentally difficient, simply just wired to do different things.

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Julia

I can relate to this so much. I always bring earbuds with me. The only problem is I’m still in school, so being in a classroom surrounded by people makes it hard. Especially when the person besides me breathes very loudly or picks their nail the whole time. I usually just put my hand on my ear and cover so I can block out most of the noise.

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Caryn

Oh, my God. I had never heard of this before, but when I was reading your post I got chills because it was so dead-on. Chewing gum, forks and knives scraping on plates, and barking dogs are THE WORST. They honestly do make me feel like lashing out, and I hate that. Sometimes I have longed to be deaf so I can NOT hear certain things, even though I know I should be grateful every day for being able to hear. I am going to do more research on this, and if it still fits I think I will share it with my closest relatives so they can understand why I don’t always want to eat dinner with them, or go on long car trips when they’re constantly sniffling (another trigger), or talk to them on the phone when they’re eating. As far as coping mechanisms go, I’ve always felt ashamed and like I’m too picky about noise — like it’s all my fault — so I mostly tell myself to cut it out which is not helpful. White noise and headphones help, but now that I have a better idea of what’s going on maybe I can find some other help for it, too. THANK YOU for posting this and helping me feel less alone!

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Paul N. Dion

Hello fellow misophonia advocate,
My name is Paul N. Dion of http://www.misophonia.com. I am considering adding a “guest blogger” feature to the http://www.misophonia.com website. I’m sending out an invitation to bloggers and to websites dealing with misophonia looking for people interested in participating in such a project.
Submissions can be on any aspect of misophonia; news items, coping strategies, pictures, personal experiences or any other related content is welcome. There is no set length of the material that can be submitted. Links back to your blog/website are encouraged.
If you’d like to submit something please send it to:
Thank you,
~Paul

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Carol Harris

I have this condition. I have been suffering from this since I was about 12 years old. The spoon hitting the bowl, the forks scrapping the plates, gum chewing, etc.. I thought I was crazy. Went to hypnosis in my 40’s. It did not help. Prayed to be free of it every day of my life until the last few years when it got better. Most of my frustrations were centered around my Mother, but anybody chewing gum still throws me into a rage. Even though I chew gum myself. I have developed coping mechanisms. I am 62. But sometimes the rage overtakes me. Glad to know it is neurological after all this time.

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Alicia

Living with it in a country where everybody and everything is extremely noisy and sticky and too much …. I would do anything to stop it, but can’t. I use medication for depression and think it helps with the anxiety…or not. Thanks for sharing your case. It has been a nightmare somedays.

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Jennifer S.

I find this so fascinating, and love that you so bravely shared your story. I don’t have this and hadn’t heard of it before today, but I know what it’s like to feel crazy because you don’t even know if the symptoms you’re experiencing are yours alone, and I agree – It’s so liberating to know there’s a name for the condition and that others can commiserate. Kudos to you and luck on your journey!

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Katrina

Thank you so much for sharing this! It’s definitely one of those things I wish I could control but I just can’t. Instead I too have honed my coping skills. Your comment about subtly covering your ears was so dead on. I arrive early to all my classes to make sure I get an end row seat so my ear on my writing hand side is ok and if needed I can cover the other ear with my hand. I almost failed my drivers exam cause another person in the testing room wouldn’t stop this heavy breathing/sniffling thing, I basically rushed thru the whole test just to get out of there. And here I am at 35, and sometimes I can’t even eat dinner with my kids and husband. But knowing other people suffer from this and I’m not just crazy does really help.

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Molly Mogren Katt

I feel your pain! That driver’s test is story is horrific. In college, I used to skip lectures where I knew people would be popping their gum over and over and over again. I know this is my issue and not other people’s, but I am still baffled by how many adults smack and pop their gum in public. And at work! I changed my dermatology office because everyone, including the doctors, chewed gum. But I digress…

I am certainly willing to try some sort of behavior therapy. But until then, it’s plugging ears, headphones and white noise.

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Molly Mogren Katt

Hi Amy,

I am sorry to hear you are going through that. I’m not sure what’s worse– having misophonia or living with someone who has it! All I can say is try not to take it personally; it seems the people closest to us often irritate us the most (probably because we know you’ll love us, regardless).

I wrote about this on my blog a few months ago & there are all sorts of comments about others suffering with similar issues. One woman said she tried some sort of therapy called Brain Highways (not even sure what that is) and it helped tremendously. I should really check it out.

You can read about it

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Amy

My 14 year old daughter started showing signs of this about a year ago.
She can not sit at the dinner table without her ear buds.
Apparently the worst chewer in our house is me! When she hears the chewing she stops mid sentence and just loses it.
She manages by plugging up or taking dinner to her bedroom.
Still deciding if we are going to therapy.
Has anyone tried therapy and was it successful?

Reply

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Behaviour is never from ‘bad’. It’s from ‘big’. Big hungry, big tired, big disconnection, big missing, big ‘too much right now’. The reason our responses might not work can often be because we’ve misread the story, or we’ve missed an important piece of it. Their story might be about now, today, yesterday, or any of the yesterdays before now. 

Our job isn’t to fix them. They aren’t broken. Our job is to understand them. Only then can we steer our response in the right direction. Otherwise we’re throwing darts at the wrong target - behaviour, instead of the need behind the behaviour. 

Watch, listen, breathe and be with. Feel what they feel. This will help them feel you with them. We all feel safer and calmer when we feel our people beside us - not judging or hurrying or questioning. What don’t you know, that they need you to know?♥️
We all have first up needs. The difference between adults and children is that we can delay the meeting of these needs for a bit longer than children - but we still need them met. 

The first most important question the brain needs answered is, ‘Is my body safe?’ - Am I free from threat, hunger, exhaustion, pain? This is usually an easier one to take care of or to recognise when it might need some attention. 

The next most important question is, ‘Is my heart safe?’ - Am I loved, noticed, valued, claimed, wanted, welcome? This can be an easy one to overlook, especially in the chaos of the morning. Of course we love them and want them - and sometimes we’ll get distracted, annoyed, frustrated, irritated. None of this changes how much we love and want them - not even for a second. We can feel two things at once - madly in love with them and annoyed/ distracted/ frustrated. Sometimes though, this can leave their ‘Is my heart safe?’ needs a little hungry. They have less capacity than us to delay the meeting of these needs. When these needs are hungry, we’ll be more likely to see big feelings or big behaviour. 

The more you can fill their love tanks at the start of the day, the more they’ll be able to handle the bumps. This doesn’t have to be big. It just has to be enough. It might look like having a cuddle, reading a story, having a chat, sitting with them while they have breakfast or while they pat the dog, touching their back when they walk past, telling them you love them.

All brains need to feel loved and wanted, and as though they aren’t a nuisance, but sometimes they’ll need to feel it more. The more their felt sense of relational safety is met, the more they’ll be able to then focus on ‘thinking brain’ things, such as planning, making good decisions, co-operating, behaving. 

(And if this today was a bumpy one, that’s okay. Those days are going to happen. If most of the time their love tanks are full, they’ll handle when it drops a little. Just top it up when you can. And don’t forget to top yours up too. Be kind to yourself. You deserve it as much as they do.)♥️
Things will always go wrong - a bad decision, a good decision with a bad outcome, a dilemma, wanting something that comes with risk. 

Often, the ‘right thing’ lives somewhere in the very blurry bounds of the grey. Sometimes it will be about what’s right for them. Sometimes what’s right for others. Sometimes it will be about taking a risk, and sometimes the ‘right’ thing just feels wrong right now, or wrong for them. Even as adults, we will often get things wrong. This isn’t because we’re bad, or because we don’t know the right thing from the wrong thing, but because few things are black and white. 

The problem with punishment and harsh consequences is that we remove ourselves as an option for them to turn to next time things end messy, or as a guide before the mess happens. 

Feeling safe in our important relationships is a primary need for all of us humans. That means making sure our relationships are free from judgement, humiliation, shame, separation. If our response to their ‘wrong things’ is to bring all of these things to the table we share with them with them, of course they’ll do anything to avoid it. This isn’t about lying or secrecy. It’s about maintaining relational ‘safety’, or closeness.

Kids want to do the right thing. They want us to love and accept them. But they’re going to get things wrong sometimes. When they do, our response will teach them either that we are safe for them to come to no matter what, or that we aren’t. 

So what do we do when things go wrong? Embrace them, reject the behaviour:

‘I love that you’ve been honest with me. That means everything to me. I know you didn’t expect things to end up like this, but here we are. Let’s talk about what’s happened and what can be different next time.’

Or, ‘Something must have made this (wrong thing) feel like the right thing to do, otherwise you wouldn’t have done it. We all do that sometimes. What do you think it was that was for you?’

Or, ‘I know you know lying isn’t okay. What made you feel like you couldn’t tell me the truth? How can we build the trust again. Let’s talk about how to do that.’

You will always be their greatest guide, but you can only be that if they let you.♥️
Whenever there is a call to courage, there will be anxiety - every time. That’s what makes it brave. This is why challenging things, brave things, important things will often drive anxiety. 

At these times - when they are safe, but doing something hard - the feelings that come with anxiety will be enough to drive avoidance. When it is avoidance of a threat, that’s important. That’s anxiety doing it’s job. But when the avoidance is in response to things that are important, brave, meaningful, that avoidance only serves to confirm the deficiency story. This is when we want to support them to take tiny steps towards that brave thing. It doesn’t have to happen all at once.l and it doesn’t matter how long it takes. Brave is about being able to handle the discomfort of anxiety enough to do the important, challenging thing. It’s built in tiny steps, one after the other. 

We don’t have to get rid of their anxiety and neither do they. They can feel anxious, and do brave. At these times (safe, but scary) they need us to take a posture of validation and confidence. ‘I believe you, and I believe in you.’ ‘I know this feels big, and I know you can handle it.’ 

What we’re saying is we know they can handle the discomfort of anxiety. They don’t have to handle it well, and they don’t have to handle it for too long. Handling it is handling it, and that’s the substance of ‘brave’. 

Being brave isn’t about doing the brave thing, but about being able to handle the discomfort of the anxiety that comes with that. And if they’ve done that today, at all, or for a moment longer than yesterday, then they’ve been brave today. It doesn’t matter how messy it was or how small it was. Let them see their brave through your eyes.‘That was big for you wasn’t it. And you did it. You felt anxious, and you stayed with it. That’s what being brave is all about.’♥️
A relationally unsafe (emotionally unsafe) environment can cause as much breakage as as a physically unsafe one. 

The brain’s priority will always be safety, so if a person or environment doesn’t feel emotionally safe, we might see big behaviour, avoidance, or reduced learning. In this case, it isn’t the child that’s broken. It’s the environment.

But here’s the thing, just because a child doesn’t feel safe, doesn’t mean the person or environment isn’t safe. What it means is that there aren’t enough signals of safety - yet, and there’s a little more work to do to build this. ‘Safety’ isn’t about what is actually safe or not, it’s about what the brain perceives. Children might have the safest, warmest, most loving adult in front of them, but that doesn’t mean they’ll feel safe. This is when we have to look at how we might extend bigger cues of warmth, welcome, inclusiveness, and what we can do (or what roles or responsibilities can we give them) to help them feel valued and needed. This might take time, and that’s okay. Children aren’t meant to feel safe with every adult in front of them, so sometimes what they need most is our patience and understanding as we continue to build this. 

This is the way it works for all of us, everywhere. None of us will be able to give our best or do our best if we don’t feel welcome, liked, valued, and free from hostility, humiliation or judgement. 

This is especially important for our schools. A brain that doesn’t feel safe can’t learn. For schools to be places of learning, they first have to be places of relationship. Before we focus too sharply on learning support and behaviour management, we first have to focus on felt sense of safety support. The most powerful way to do this is through relationship. Teachers who do this are magic-makers. They show a phenomenal capacity to expand a child’s capacity to learn, calm big behaviour, and open up a child’s world. But relationships take time, and felt safety takes time. The time it takes for this to happen is all part of the process. It’s not a waste of time, it’s the most important use of it.♥️

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