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.

Reply
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

Reply
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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Lead with warmth and confidence: ‘Yes I know this feels big, and yes I know you can handle it.’ 

We’re not saying they’ll handle it well, and we’re not dismissing their anxiety. What we’re saying is ‘I know you can handle the discomfort of anxiety.’ 

It’s not our job to relive this discomfort. We’ll want to, but we don’t have to. Our job is to give them the experiences they need (when it’s safe) to let them see that they can handle the discomfort of anxiety. 

This is important, because there will  always be anxiety when they do something brave, new, important, growthful. 

They can feel anxious and do brave. Leading with warmth and confidence is about, ‘Yes, I believe you that this feels bad, and yes, I believe in you.’ When we believe in them, they will follow. So often though, it will start with us.♥️
There are things we do because we love them, but that doesn’t mean they’ll feel loved because of those things.

Of course our kids know we love them, and we know they love us. But sometimes, they might feel disconnected from that feeling of being ‘loved by’. As parents, we might feel disconnected from the feeling of being ‘appreciated by’.

It’s no coincidence that sometimes their need to feel loved, and our need to feel appreciated collide. This collision won’t sound like crashing metal or breaking concrete. It will sound like anger, frustration, demanding, nagging. 

It will feel like not mattering, resentment, disconnection. It can burst through us like meteors of anger, frustration, irritation, defiance. It can be this way for us and our young ones. (And our adult relationships too.)

We humans have funny ways of saying, ‘I miss you.’

Our ‘I miss you’ might sound like nagging, annoyance, anger. It might feel like resentment, rage, being taken for granted, sadness, loneliness. It might look like being less playful, less delighting in their presence.

Their ‘I miss you’ might look like tantrums, aggression, tears, ignoring, defiant indifference, attention-seeking (attention-needing). It might sound like demands, anger, frustration.

The point is, there are things we do because we love them - cleaning, the laundry, the groceries, cooking. And yes, we want them to be grateful, but feeling grateful and feeling loved are different things. 

Sometimes the things that make them feel loved are so surprising and simple and unexpected - seeking them out for play, micro-connections, the way you touch their hair at bedtime, the sound of your laugh at their jokes, when you delight in their presence (‘Gosh I’ve missed you today!’ Or, ‘I love being your mum so much. I love it better than everything. Even chips. If someone said you can be queen of the universe or Molly’s mum, I’d say ‘Pfft don’t annoy me with your offers of a crown. I’m Molly’s mum and I’ll never love being anything more.’’)

So ask them, ‘What do I do that makes you feel loved?’ If they say ‘When you buy me Lego’, gently guide them away from bought things, and towards what you do for them or with them.♥️
We don’t have to protect them from the discomfort of anxiety. We’ll want to, but we don’t have to.

OAnxiety often feels bigger than them, but it isn’t. This is a wisdom that only comes from experience. The more they sit with their anxiety, the more they will see that they can feel anxious and do brave anyway. Sometimes brave means moving forward. Sometimes it means standing still while the feeling washes away. 

It’s about sharing the space, not getting pushed out of it.

Our job as their adults isn’t to fix the discomfort of anxiety, but to help them recognise that they can handle that discomfort - because it’s going to be there whenever they do something brave, hard , important. When we move them to avoid anxiety, we potentially, inadvertently, also move them to avoid brave, hard, growthful things. 

‘Brave’ rarely feels brave. It will feel jagged and raw. Sometimes fragile and threadbare. Sometimes it will as though it’s breathing fire. But that’s how brave feels sometimes. 

The more they sit with the discomfort of anxiety, the more they will see that anxiety isn’t an enemy. They don’t have to be scared of it. It’s a faithful ally, a protector, and it’s telling them, ‘Brave lives here. Stay with me. Let me show you.’♥️
.
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#parenting #childanxiety #anxietyinkids #teenanxiety
We have to stop treating anxiety as a disorder. Even for kids who have seismic levels of anxiety, pathologising anxiety will not serve them at all. All it will do is add to their need to avoid the thing that’s driving anxiety, which will most often be something brave, hard, important. (Of course if they are in front of an actual danger, we help anxiety do its job and get them out of the way of that danger, but that’s not the anxiety we’re talking about here.)

The key to anxiety isn’t in the ‘getting rid of’ anxiety, but in the ‘moving with’ anxiety. 

The story they (or we) put to their anxiety will determine their response. ‘You have anxiety. We need to fix it or avoid the thing that’s causing it,’ will drive a different response to, ‘Of course you have anxiety. You’re about to do something brave. What’s one little step you can take towards it?’

This doesn’t mean they will be able to ‘move with’ their anxiety straight away. The point is, the way we talk to them about anxiety matters. 

We don’t want them to be scared of anxiety, because we don’t want them to be scared of the brave, important, new, hard things that drive anxiety. Instead, we want to validate and normalise their anxiety, and attach it to a story that opens the way for brave: 

‘Yes you feel anxious - that’s because you’re about to do something brave. Sometimes it feels like it happens for no reason at all. That’s because we don’t always know what your brain is thinking. Maybe it’s thinking about doing something brave. Maybe it’s thinking about something that happened last week or last year. We don’t always know, and that’s okay. It can feel scary, and you’re safe. I would never let you do something unsafe, or something I didn’t think you could handle. Yes you feel anxious, and yes you can do this. You mightn’t feel brave, but you can do brave. What can I do to help you be brave right now?’♥️

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