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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When our kids or teens are struggling, it can be hard to know what they need. It can also be hard for them to say. It can be this way for all of us - we don't always know what we need from the people around us. It might be space, or distraction, or silence, or maybe acknowledging and being there is enough. Sometimes we might need to know that the people we love aren't taking our need for space, or our confusion or anger or sadness personally, and that they are still there within reach.
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What can be easier is thinking about what other people might need. Asking this when they are calm can invite a different perspective and can give you some insight into what they need to hear when they are going through similar. Don't worry if you just get a shrug, or a disheartened, 'I don't know'. They don't need to know, and neither do we. The question in itself might be enough to open a new way through any sense of 'stuckness' or helplessness they might be feeling.
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#parenthood #parenting #positiveparenting #parentingtips #childdevelopment #parentingadvice #parentingtip #mindfulparenting #positiveparentingtips #neurodevelopment #parentingteens
Give them space to talk but you don’t need to fix anything. You’ll want to, but the answers are in them, not us. Sometimes the answer will be to feel it out, or push for change, or feel the futility of it all so the feeling can let go, knowing it’s done it’s job - it’s recruited support, or raised awareness that something isn’t right.

Sometimes the feelings might be seismic but the words might be gone for a while. That’s okay too. Do they want to start with whatever words are there? Or talk about something else? Or go for a walk with you? Watch a movie with you? Or do a spontaneous, unnecessary drive thru with you just because you can - no words, no need to explain - just you and them and car music for the next 20 minutes. 

The more you can validate what they’re feeling (maybe, ‘Today was big for you wasn’t it’) and give them space to feel, the more they can feel the feeling, understand the need that’s fuelling it, and experiment with ways to deal with it. Sometimes, ‘dealing with it’ might mean acknowledging that there is something that feels big or important and a little out of reach right now, and feeling the fullness and futility of that. 

Part of building resilience is recognising that some days are rubbish, and that sometimes those days last for longer than they should, but we get through. First we feel floored, then we feel stuck, then we shift because the only choices we have we have are to stay down or move, even when moving hurts. Then, eventually we adjust - either ourselves, the problem, or to a new ‘is’. But the learning comes from experience.

I wish our kids never felt pain, but we don’t get to decide that. We don’t get to decide how our children grow, but we do get to decide how much space and support we give them for this growth. We can love them through it but we can’t love them out of it. I wish we could but we can’t.

So instead of feeling the need to silence their pain, make space for it. In the end we have no choice. Sometimes all the love in the world won’t be enough to put the wrong things right, but it can help them feel held while they move through the pain enough to find their out breath, and the strength that comes with that.♥️
Speaking to the courage that is coming to life inside them helps to bring it close enough for them to touch, and to imagine, and to step into, even if doesn’t feel real for them yet. It will become them soon enough but until then, we can help them see what we see - a brave, strong, flight-ready child who just might not realise it yet. ‘I know how brave you are.’ ‘I love that you make hard decisions sometimes, even when it would be easier to do the other thing.’ ‘You might not feel brave, but I know what it means to you to be doing this. Trust me – you are one of the bravest people I know.’
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 #neurodevelopment #positiveparenting #parenting #parenthood #neuronurtured #parentingtip #childdevelopment #braindevelopment #mindfulparenting #parentingtips #parentingadvice
So often, our children will look to us for signs of whether they are brave enough, strong enough, good enough. Let your belief in them be so big, that it spills out of you and over to them and forms the path between them and their mountain. And then, let them know that the outcome doesn't matter. What matters is that they believe in themselves enough to try. 

Their belief in themselves might take time to grow, and that's okay. In the meantime, let them know you believe in them enough for both of you. Try, ‘I know this feels big and I know you can do it. What is one small step you can take? I’m right here with you.’♥️
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 #neurodevelopment #positiveparenting #parenting #parenthood #neuronurtured #parentingtip #childdevelopment #braindevelopment #mindfulparenting
Anxiety will tell our kiddos a deficiency story. It will focus them on what they can't do and turn them away from what they can. We know they are braver, stronger, and more powerful than they could ever think they are. We know that for certain because we’ve seen it before. We’ve seen them so held by anxiety, and we’ve seen them move through - not every time but enough times to know that they can. Even when those steps through are small and awkward and uncertain, they are brave. Because that’s how courage works. It’s fragile and strong, uncertain and powerful. We know that that about courage and we know that about them. 

Our job as their important adults is to give them the experiences that will help them know it too. This doesn't have to happen in big leaps. Little steps are enough, as long as they are forward. 

When their anxiety has them focused on what they can't do, focus them on what they can. By doing this, we are aligning with their capacity for brave, and bringing it into the light. 

Anxiety will have them believing that there are only two options - all or nothing; to do or not to do. So let's introduce a third. Let's invite them into the grey. This is where brave, bold beautiful things are built, one tiny step at a time. So what does this look like? It looks like one tiny step at a time. The steps can be so small at first - it doesn't matter how big they are, as long as they are forward. 
If they can't stay for the whole of camp, how much can they stay for?
If they can't do the whole swimming lesson on their own, how much can they do?
If they can't sleep all night in their own bed, how long can they sleep there for?
If they can't do the exam on their own, what can they do?
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When we do this, we align with their brave, and gently help it rise, little bit, by little bit. We give them the experiences they need to know that even when they feel anxious, they can do brave, and even when they feel fragile they are powerful.

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