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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Big feelings, and the big behaviour that comes from big feelings, are a sign of a distressed nervous system. Think of this like a burning building. The behaviour is the smoke. The fire is a distressed nervous system. It’s so tempting to respond directly to the behaviour (the smoke), but by doing this, we ignore the fire. Their behaviour and feelings in that moment are a call for support - for us to help that distressed brain and body find the way home. 

The most powerful language for any nervous system is another nervous system. They will catch our distress (as we will catch theirs) but they will also catch our calm. It can be tempting to move them to independence on this too quickly, but it just doesn’t work this way. Children can only learn to self-regulate with lots (and lots and lots) of experience co-regulating. 

This isn’t something that can be taught. It’s something that has to be experienced over and over. It’s like so many things - driving a car, playing the piano - we can talk all we want about ‘how’ but it’s not until we ‘do’ over and over that we get better at it. 

Self-regulation works the same way. It’s not until children have repeated experiences with an adult bringing them back to calm, that they develop the neural pathways to come back to calm on their own. 

An important part of this is making sure we are guiding that nervous system with tender, gentle hands and a steady heart. This is where our own self-regulation becomes important. Our nervous systems speak to each other every moment of every day. When our children or teens are distressed, we will start to feel that distress. It becomes a loop. We feel what they feel, they feel what we feel. Our own capacity to self-regulate is the circuit breaker. 

This can be so tough, but it can happen in microbreaks. A few strong steady breaths can calm our own nervous system, which we can then use to calm theirs. Breathe, and be with. It’s that simple, but so tough to do some days. When they come back to calm, then have those transformational chats - What happened? What can make it easier next time?

Who you are in the moment will always be more important than what you do.
How we are with them, when they are their everyday selves and when they aren’t so adorable, will build their view of three things: the world, its people, and themselves. This will then inform how they respond to the world and how they build their very important space in it. 

Will it be a loving, warm, open-hearted space with lots of doors for them to throw open to the people and experiences that are right for them? Or will it be a space with solid, too high walls that close out too many of the people and experiences that would nourish them.

They will learn from what we do with them and to them, for better or worse. We don’t teach them that the world is safe for them to reach into - we show them. We don’t teach them to be kind, respectful, and compassionate. We show them. We don’t teach them that they matter, and that other people matter, and that their voices and their opinions matter. We show them. We don’t teach them that they are little joy mongers who light up the world. We show them. 

But we have to be radically kind with ourselves too. None of this is about perfection. Parenting is hard, and days will be hard, and on too many of those days we’ll be hard too. That’s okay. We’ll say things we shouldn’t say and do things we shouldn’t do. We’re human too. Let’s not put pressure on our kiddos to be perfect by pretending that we are. As long as we repair the ruptures as soon as we can, and bathe them in love and the warmth of us as much as we can, they will be okay.

This also isn’t about not having boundaries. We need to be the guardians of their world and show them where the edges are. But in the guarding of those boundaries we can be strong and loving, strong and gentle. We can love them, and redirect their behaviour.

It’s when we own our stuff(ups) and when we let them see us fall and rise with strength, integrity, and compassion, and when we hold them gently through the mess of it all, that they learn about humility, and vulnerability, and the importance of holding bruised hearts with tender hands. It’s not about perfection, it’s about consistency, and honesty, and the way we respond to them the most.♥️

#parenting #mindfulparenting
Anxiety and courage always exist together. It can be no other way. Anxiety is a call to courage. It means you're about to do something brave, so when there is one the other will be there too. Their courage might feel so small and be whisper quiet, but it will always be there and always ready to show up when they need it to.
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But courage doesn’t always feel like courage, and it won't always show itself as a readiness. Instead, it might show as a rising - from fear, from uncertainty, from anger. None of these mean an absence of courage. They are the making of space, and the opportunity for courage to rise.
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When the noise from anxiety is loud and obtuse, we’ll have to gently add our voices to usher their courage into the light. We can do this speaking of it and to it, and by shifting the focus from their anxiety to their brave. The one we focus on is ultimately what will become powerful. It will be the one we energise. Anxiety will already have their focus, so we’ll need to make sure their courage has ours.
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But we have to speak to their fear as well, in a way that makes space for it to be held and soothed, with strength. Their fear has an important job to do - to recruit the support of someone who can help them feel safe. Only when their fear has been heard will it rest and make way for their brave.
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What does this look like? Tell them their stories of brave, but acknowledge the fear that made it tough. Stories help them process their emotional experiences in a safe way. It brings word to the feelings and helps those big feelings make sense and find containment. ‘You were really worried about that exam weren’t you. You couldn’t get to sleep the night before. It was tough going to school but you got up, you got dressed, you ... and you did it. Then you ...’
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In the moment, speak to their brave by first acknowledging their need to flee (or fight), then tell them what you know to be true - ‘This feels scary for you doesn’t it. I know you want to run. It makes so much sense that you would want to do that. I also know you can do hard things. My darling, I know it with everything in me.’
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#positiveparenting #parenting #childanxiety #anxietyinchildren #mindfulpare
Separation anxiety has an important job to do - it’s designed to keep children safe by driving them to stay close to their important adults. Gosh it can feel brutal sometimes though.

Whenever there is separation from an attachment person there will be anxiety unless there are two things: attachment with another trusted, loving adult; and a felt sense of you holding on, even when you aren't beside them. Putting these in place will help soften anxiety.

As long as children are are in the loving care of a trusted adult, there's no need to avoid separation. We'll need to remind ourselves of this so we can hold on to ourselves when our own anxiety is rising in response to theirs. 

If separation is the problem, connection has to be the solution. The connection can be with any loving adult, but it's more than an adult being present. It needs an adult who, through their strong, warm, loving presence, shows the child their abundant intention to care for that child, and their joy in doing so. This can be helped along by showing that you trust the adult to love that child big in our absence. 'I know [important adult] loves you and is going to take such good care of you.'

To help your young one feel held on to by you, even in absence, let them know you'll be thinking of them and can't wait to see them. Bolster this by giving them something of yours to hold while you're gone - a scarf, a note - anything that will be felt as 'you'.

They know you are the one who makes sure their world is safe, so they’ll be looking to you for signs of safety: 'Do you think we'll be okay if we aren't together?' First, validate: 'You really want to stay with me, don't you. I wish I could stay with you too! It's hard being away from your special people isn't it.' Then, be their brave. Let it be big enough to wrap around them so they can rest in the safety and strength of it: 'I know you can do this, love. We can do hard things can't we.'

Part of growing up brave is learning that the presence of anxiety doesn't always mean something is wrong. Sometimes it means they are on the edge of brave - and being away from you for a while counts as brave.
Even the most loving, emotionally available adult might feel frustration, anger, helplessness or distress in response to a child’s big feelings. This is how it’s meant to work. 

Their distress (fight/flight) will raise distress in us. The purpose is to move us to protect or support or them, but of course it doesn’t always work this way. When their big feelings recruit ours it can drive us more to fight (anger, blame), or to flee (avoid, ignore, separate them from us) which can steal our capacity to support them. It will happen to all of us from time to time. 

Kids and teens can’t learn to manage big feelings on their own until they’ve done it plenty of times with a calm, loving adult. This is where co-regulation comes in. It helps build the vital neural pathways between big feelings and calm. They can’t build those pathways on their own. 

It’s like driving a car. We can tell them how to drive as much as we like, but ‘talking about’ won’t mean they’re ready to hit the road by themselves. Instead we sit with them in the front seat for hours, driving ‘with’ until they can do it on their own. Feelings are the same. We feel ‘with’, over and over, until they can do it on their own. 

What can help is pausing for a moment to see the behaviour for what it is - a call for support. It’s NOT bad behaviour or bad parenting. It’s not that.

Our own feelings can give us a clue to what our children are feeling. It’s a normal, healthy, adaptive way for them to share an emotional load they weren’t meant to carry on their own. Self-regulation makes space for us to hold those feelings with them until those big feelings ease. 

Self-regulation can happen in micro moments. First, see the feelings or behaviour for what it is - a call for support. Then breathe. This will calm your nervous system, so you can calm theirs. In the same way we will catch their distress, they will also catch ours - but they can also catch our calm. Breathe, validate, and be ‘with’. And you don’t need to do more than that.

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