Misophonia & misokinesia: going public with the personal secret I’ve tightly held onto for more than
I remember the day—the moment—it all began.
It was April of 1989, and I was on vacation with my family.
We spent another day soaking up the warm Caribbean sun and swimming in the salty, turquoise water. By all accounts, I was a darn lucky kid to be on a trip like this.
As the sun softened in the sky, dinnertime drew near. The evening meal was BBQ chicken on the sailboat’s little grill. It was our favorite.
There was something about eating on the water that we all loved and talked about long after we returned home to Massachusetts.
Sitting around the boat’s cockpit, plates on our laps, drinks balanced wherever they’d fit, we ate.
Instantly, my gut wrenched.
Panic flooded my body.
Tears welled in my eyes.
I felt itchy all over and wanted to crawl out of my own skin.
It took all I had to not cover my ears and scream at the top of my lungs. I wanted to ditch my food, dive into the ocean, and get as far away from this meal as possible.
But my reaction had nothing to do with the food itself.
Something else entirely had overcome my entire being. Something I didn’t understand—and wouldn’t for another 26 years.
I Thought I Was Crazy
It was hard though, because I was constantly in panic mode. Worse, it wasn’t just at meal time. It was nearly All. Day. Long.
All I could think was, “What’s happening to me?”
After that vacation in 1989, this became my life.
Common human sounds triggered an overwhelming sensation for me.
Chewing ice, crunching tortilla chips, slurping, gulping, someone uttering even a single word with a single speck of food in their mouth (let alone eating with their mouth open or talking with food shoved in their cheek), sniffles, whispers, the crinkle of a bag of chips (or crackers or granola or anything that comes in a thick plastic bag), the smack of flip flops, the shuffling of shoes on the ground, high-pitched sounds coming from light bulbs or other electronics, little girls screeching on a playground, the ticking of a clock, the clickety-clack of a keyboard, a metal spoon scraping a ceramic bowl, popcorn-eating at a movie theater, the sound of a knife on a glass cutting board, the sound of utensils touching someone’s teeth.
The list goes on and on. As a general rule of thumb, if it’s associated with the human body or food and makes even the slightest noise, it triggers me. Though lots of other noises are included in my extensive trigger list, too.
This became my deep, dark secret. I told no one. Not during childhood, in college, or throughout my adult life.
Sure, my husband knew that there was nothing worse for me than him eating chips or granola in my presence. But because I believed I was crazy, so did he. So I didn’t dare tell anyone.
Then everything changed the day I realized I wasn’t crazy. It was the day I realized what afflicted me had a name.
Realizing I Was Not Alone
NPR’s podcast Invisibilia had just come out, and I was loving the first season.
I can’t remember the episode or the story that set me off Googling, but I plunged into mega research mode.
It took a few weeks of searching to find just the right words, but once I learned there was a word for what I was experiencing, I cried. And cried. And cried. With relief.
26 years of pent up emotion. 26 years of thinking I was crazy. 26 years of feeling like the only person who suffered on a daily basis by normal human interactions.
There was a name for my crazy: misophonia. Even better, I wasn’t the only one who suffered. There are lots of misophones in the world, Kelly Rippa included.
I told Paul I wasn’t crazy. I told him my problem with “food noises” (what we called it) had a name. I read him articles and stories of other people who live with this condition. I found videos online. I found people who wrote about their experiences. I found family members pleading for help for their afflicted loved ones.
I was no longer alone.
What It’s Like to Live with Misophonia
Misophonia is defined as hatred of sound. But anyone with misophonia will tell you this description doesn’t even come close to explaining what it’s like to live with this condition.
Play along with me for just a moment.
1. Think of a sound that makes your skin crawl. For most people that might be nails on a chalkboard.
2. Imagine hearing that skin-crawling sound.
3. Feel what it feels like on the inside of your body when you hear that sound.
4. Now 5-10x the volume inside your head and 5-10x the sensation inside your body.
5. Really feel what that sensation is like (and how much you want to run from it).
Okay, you can let it go now. It hurts, I know.
That’s what it’s like to have misophonia. Except instead of just feeling that sensation with a noise like nails on a chalkboard, something you rarely hear, you experience it all day, every day, with nearly every human encounter.
Yes, it totally sucks.
Misokinesia: Misophonia’s Sister Syndrome
For some of us with misophonia, we have a sister condition called misokinesia, or hatred of motion. This means certain movements cause the same gut-wrenching reaction that sounds cause.
Here are just a few examples of the movements that cause a trigger reaction in me:
Someone picking at or their biting nails, a leg or foot shaking, the way my husband holds a bottle of kombucha or a can of soda, the twirl of a pen in someone’s hand, the motion of putting a fork with food on it into someone’s mouth, the face people make when the swallow liquid, simply seeing someone talk with food in their mouth. (Just to name a few.)
Simple, everyday, unavoidable noises and gestures become an incessant stream of triggers that send me directly into fight or flight.
Cortisol floods my body almost constantly, no matter how hard I try to stay calm.
Even worse, the closer you are with someone, the worse they trigger you.
This means that once misophonia entered my world in 1989, the most painful time of day was mealtime with my family. Sitting there, listening to the worst of all of my triggers for a full half-hour (or longer) was a daily torture session.
Unfortunately, this is still true today. Though fortunately, I’m better at holding my shit (mostly) together.
I Still Kept It a Secret
When I discovered the truth about myself, I still kept my misophonia a secret.
I tried to be brave and tell a few people, but it scared me too much to come out with it.
Because, let’s be honest, this sounds utterly ridiculous! Fight or flight triggers from simple sounds like eating food and sniffly noses and common gestures like leg shakes and nail picking? Absurd!
I feared those closest to me would have a reaction similar to what most misophones get: Suck it up. Get over it. It’s no big deal. Stop it. Deal with it. It’s not my problem.
Yikes. No thank you. Because it is a BFD when it’s your life.
That’s why I kept this a secret this whole time. Others’ dismissive reactions would be worse than grinning and bearing it as I have all of these years.
It’s true: My family doesn’t know I have misophonia. Most of my friends don’t know, either.
(Though as I write this, I’m considering sending them a link to this post as my coming out story. It’s easier to have them read it than try to explain it, because it does sound nuts. Hi Mom! Hi Dad! Hi Sis! Hi Friend! Cat’s outta the bag! I’m not crazy—I just have misophonia!)
Once they read it, I bet a lot of things with click for them about how I show up in the world.
Like why, as a kid, I often shoved dinner down and used homework as a reason for leaving the dinner table as quickly as possible.
Why I don’t make eye contact and often “check out” when I eat meals with other people.
Why I give people a death stare when they pick at their fingernails.
Why, when visiting others, I take a shower or go for a walk while my hosts eat breakfast. Why I love cleaning up after dinner instead of hanging around while everyone picks at their plates.
…and all the other things people in my life have probably labeled as Jenny’s quirks. (I can’t blame them. These behaviors are odd on top of my natural quirkiness, especially when you don’t know there’s a reason for them.)
There Is No Cure
Sadly, there is no cure for misophonia or misokinesia (and please don’t send me articles unless you have cured yourself from misophonia, in which case don’t wait a freaking second).
There are just coping strategies:
Ear inserts that are like hearing aids but they spit out pink/white noise (I prefer straight-up drug store, hot pink earplugs and carry a pair with me EVERYWHERE.)
Exposure therapy, similar to the treatment for OCD, which I tried last year and it’s pure hell!
De-stressing techniques like meditation and mindfulness.
And… that’s about it. Unfortunately, none of it cures the condition.
There’s a lot of uncertainty what misophonia and misokinesia actually are and why some people get it and others don’t. There’s speculation about genetics, early childhood trauma, neurological causes, but no one really knows, and there are very few people researching it.
Oddly enough, it often just “starts” for people. For me, that one day on vacation, it just turned on.
Sadly, some misophones have become house-ridden and anti-social, because the smallest sound sends them reeling.
Fortunately, I developed some well-honed coping skills simply because I was too afraid to tell anyone for so damn long. In that way, my fear of sharing this secret actually helped me.
This Is Not a Pity Party
Just like when I shared my Lyme story, this isn’t about creating a public pity party. It’s about telling the truth. The truth about life, business, and the challenges we get thrown at us.
I don’t expect you to be different around me. I don’t expect you to feel badly for me.
Though, of course, if you feel inclined to be mindful of not talking with even a speck of food in your mouth, holding off on the nail-picking until I’m not around, and giving me leeway to suddenly need to be alone, I promise you I’d be more grateful than you could ever realize. It’d be better than winning the lottery.
If you’ve known me for awhile and you’re hearing this for the first time (which is quite likely), thank you for reading. Thank you for understanding. And I’m sorry I was so scared to tell you before.
If you’re someone holding onto a secret of your own, know that it’s okay. It’s okay to keep it a secret until you’re ready to share (if ever). It’s okay to spill the beans whenever it feels right.
If you have misophonia, I’m so sorry!! I know it sucks. Maybe we can trade coping strategies someday.
But no matter what challenges life and business has thrown you, you’re in good company.
There are others like you out there somewhere even when you feel alone. As they say, everyone you meet is fighting a hard battle of their own (even if it’s a different battle from yours).
This is a blogpost originally posted by Jenny Shih