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Having a disorder that few have heard of is frustrating. Having a disorder that is becoming more and more misunderstood is terrifying. When you see misophonia in the press, you are shown a disorder that’s classified as “chewing rage,” “sound rage” and other derogative terms. The truth of the matter is that my misophonia is much more than that.

What these sensationalist articles don’t say is how difficult it is to get out of bed when your sensory system is overloaded. How fabrics, aromas and other stimuli can hit you in the face. The world of sensory overload is much larger than auditory over-responsivity, and yet, the media continues to portray us as “sound haters.”

My sensory disorder makes it hard for me to attend family functions, go out with friends and sometimes it even makes me unable to leave my bed. If I’ve had triggers accumulate too much in that week, I will become lethargic, and if I don’t slow down, I get a migraine. My brain and body are in a constant fight with the world around me. Another proponent of the disorder I have, as do others, is a reaction to visual stimuli. This has often been overlooked by the media. For some of us, swaying, leg-shaking and other visual sensations can cause the same fight/flight/freeze response. Paired with smells that make us uncomfortable, and fabrics, this can often mean the entire world becomes a battleground.

There is no differentiation between visual triggers and auditory triggers for me. Both are absolutely infuriating and have made my day-to-day life nearly impossible. Though I keep going and try to raise awareness where I can, the truth remains that some days I just can’t face the stimuli. As a 22-year-old, this has had a huge impact on my life. Due to triggers I was forced to switch from my brick-and-mortar university to an online option. Socializing has become a pain. Relationships are strained.

When starting misophoniaawareness.org, I was scared and confused. I had no idea what I faced, but I moved forward. Today I can say that I have been working as hard as I can to help relieve stigma for people with misophonia. But media can makes this hard. We are constantly feeling belittled as stories show people with misophonia in exaggerated situations, often perpetrated as “weird,” “unusual” or “strange.” We are not a story to laugh at. We are real people struggling with the world around us, knowing we will likely face fight-or-flight situations every day.

I am frustrated by our treatment by internet memes. I am frustrated that misophonia and other disorders that aren’t better understood are often treated as little more than a talking point for laughter. While I try to fix this by helping run a news site and magazine Misophonia International, there is still much to be done. Advocates for all disorders need to band together and help the world understand that we are more than a label. We are individuals fighting as hard as we can to live a “normal” life. Some days are harder, and other days we are able to live comfortably. Some days we meet in the middle. This is not a sign of weakness but strength.

Misophonia is not chewing rage. It is not sound rage. The anger we feel is often after there are no other emotions left. We are often first scared and uncomfortable, and it can be difficult to control our emotions. The anger comes when we realize there is little left to feel as the world becomes a strange mixture of sensory overload.

Misophonia may not have a cure, but it can be greatly lessened by the support of loved ones. Simply knowing the person with you is willing to accommodate or understand can have a huge impact on the life of people with misophonia. The anxiety before a trigger is much lower when you know you have the support of your companion.

As for misophonia itself, people with misophonia should try to keep their stress levels as low as possible. It’s OK to feel overwhelmed and take a break. There is no “failure” in taking as many mental health days as possible when your brain needs it.

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When my daughter was just 6 years old, she looked up at me and said, “When I hear bad noises I feel like I am turning into the Incredible Hulk. Mommy…can you fix my brain?”

Today, she is 22 years old. She is beautiful, social, creative and an academic standout. She is living with misophonia. Her condition is present in her life but has not defined nor limited it.

It’s a long journey between those two points. In fact, it’s still ongoing, and it has defined much of my life and work.

In the simplest terms, misophonia is a disorder in which certain common auditory stimuli are misinterpreted as dangerous. Individuals with misophonia are “triggered” by repetitive, patterned-based sounds such as chewing, coughing, pencil tapping, sneezing, etc. Misophonia is physiologically based and not psychologically based, and if a child or an adult with misophonia react to the sounds you are making (throat clearing, a fork dinging a plate, tapping of feet under the dinner table), they aren’t behaving badly, and they’re not angry with you. The sound is making them angry. Also, misophones (people with misophonia) might not be unable to calm down as quickly as others because the branch of the nervous system meant to subdue the fight-or-flight response might take longer to kick in.

I first became aware of misophonia through my daughter’s experiences and because I have symptoms as well. Misophonia is a relatively new term; however, it has been studied for decades, and when my daughter was diagnosed back in the 1990s, we knew the condition as a subtype of sensory processing disorder. Soon, I found more and more people who had this condition, or had family members who were misophones. Even as awareness spread — you know, that “Wow, you have that too?” phenomenon — reliable information was scant and contradictory.

As a psychologist, I decided to devote a significant portion of my life to studying the condition, not to mention advocating for research and education.

I soon determined that to develop effective methods for helping people with misophonia (much less understand the underlying causes of the condition), mental health researchers and clinicians had to pull from educational psychology, neuroscience, counseling psychology, cognitive psychology, developmental psychology, and clinical psychology, and gain a working knowledge of sensory processing. My first step had to be to encourage active communication amongst all of these people, each of whom were privy to some vital parts of the puzzle, but none of whom were talking to each other.

With all this in mind, in 2007 I began the Sensation and Emotion Network, and in 2008 I founded the Sensory Processing and Emotion Regulation Program at Duke University. More recently, I began the International Misophonia Research Network and become a proud advocate with the A2A (Adversity to Advocacy) Alliance, an amazing network of different kinds of disability, health, mental health and other advocates.

In slightly different yet complimentary ways, each of these groups seeks to get people talking to each other: people with misophonia, parents, doctors, academicians, psychologists, occupational therapists, even people crawling over the unmapped roads of the internet searching for some reason why they just started screaming at Great Aunt Clara at Thanksgiving dinner.

I must stress that none of the groups I helped start claim, even remotely, to have found a “cure” for misophonia. But by getting all of these people together to discuss this extraordinary puzzle and share what they know — and by sharing knowledge about the many elements that make up misophonia — we can intelligently develop compassionate ways to help people live with this common condition.

All the time, I think of that moment when my daughter asked me to fix her brain.

I also hear these words echoed in the emails and calls I get from the children and adults who live with misophonia.

No, we can’t make the bad noises stop.

But we can help her and everyone else with this condition (and their families) understand what is going on in their brain and bodies, we can suggest much-tested ways for those with misophonia (and those around them) to live with the condition; and we can get all the people who hold some piece of the sensory disorders puzzle together and find out more and more about what’s going on inside the brain and body of someone with misophonia.

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I was a teenager when my grandmother moved in with us. My grandfather had passed away and my grandmother suffered from Alzheimer’s. My parents brought her back to Virginia so we could help care for her. Grandma was an “old school” kind of gal. She wore polyester dresses, stockings with heels, she had her hair done weekly and carried a pocketbook.

My mother and older sister were her primary caregivers. She enjoyed sitting with me to watch television in those days. She also had false teeth. I would cringe at the sound as she played with the teeth in her mouth while I was trying to watch a show. That was just the beginning.

Many years and four kids later, I started to notice how moody I became when my kids would chew with their mouthes open while eating or chewing gum. I was also easily annoyed at repetitive noises such as the tapping of a pencil or the sound of a dog licking. I felt like such a “mean mom.” I was constantly saying “chew with your mouth closed” and “stop making so much noise.” I convinced myself that this was normal because I was teaching my kids manners. I worried I was becoming less patient with age and chalked it up to being overwhelmed. During that time period, I had read somewhere that when you are stressed, your senses are heightened. I am not sure if that is true, but considering what I was going through, I embraced the theory.

Many times we would hang out with our family and friends on the weekends. We traveled frequently during the summer and spent most holidays together. They became our extended family. We have seven children between our two families. An average get-together included slamming doors, toys being thrown, movies playing, temper tantrums and kids screaming in laughter. The kids usually ate before the adults due to space and the urgency of playtime. As the kids grew older and actually sat with us for meals, I started noticing the sounds of mealtime became less and less tolerable. I remember specifically on one of our trips to the mountains, their daughter was sitting next to me during dinner and eating. I heard every scrape of the fork on her plate and every slurp of her drink. It sounded as if it were in stereo. The sound sent a “rage-like” feeling to my brain. I literally wanted to punch someone (of course I wouldn’t). From that moment on it became common knowledge that I was moody and irritable with noise. However, for me it was frustrating. It wasn’t all noises. It seemed to center on meals and repetitious noise.

Out of the blue one day I received a text from my friend with a link attached. When I clicked on the link, it was an article talking about Kelly Ripa and her struggles with misophonia, also sometimes called selective sound sensitivity syndrome. Miso-what? I thought. I read the article and other information that surfaced after the announcement. I was finally vindicated! There was finally an explanation for my peculiar mood swings!

Today my family and friends are more understanding about these aversions. They still tease me, but they understand it could be neurological. Understanding my reaction has been a lifesaver. Thank you, Kelly Ripa!

A version of this post originally appeared Her View From Home.

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Every day, I dread eating meals. I actively avoid places where I know there will be a large amount of people eating, which normally means restaurants and movie theaters. It’s even worse when I’m in a place with little to no background noise. In short, I’m driven absolutely bonkers when people chew food and gum. This isn’t painful or loud, like with hyperacusis — this is misophonia, something that, as I now know, so few people have and fewer people understand.

For years I thought that the people around me were just being rude, and that I was somehow the only one catching onto this. One of my best friends chews with his mouth open, and no one will say a word, while my wife seemingly chews very, very loudly, regardless of what she’s eating. I have never been able to understand how others around me can stand to listen to others eating or chewing, especially when some people do this so much louder than others.

I’ve often described this as being absolutely infuriating to me, causing me to say things like, “I’ll rip out your lower jaw if you don’t spit out that gum!” Normally, I need to excuse myself from an area so I don’t have to suffer listening to that sound. To me, it’s comparable to raking your nails across a chalk board, but the reaction is magnified a million times over.

I sat and attempted to deal with this nearly my entire life. I can remember asking my brother not to eat near me because he was “too loud” and trying to leave the dinner table quickly so I didn’t have to listen to my folks. All the way up until I was 29, I assumed that I was one of the few people that found this “impolite” and that a lot of people around me needed to obtain some basic table manners.

Thankfully, I know now this isn’t something I’ve been able to control this entire time, and that I have not been purposefully ignorant of how to tolerate people making noises while they eat. This is a condition that, from what I’ve been able to gather, is “hard-wired” at birth; it doesn’t just happen out of the blue. I also understand that this is something very few people have — which explains why I’ve been so isolated up until a friend recognized what I had and explained to me a bit more (a massive relief, I must say!).

Unfortunately, there isn’t any treatment that’s proven effective for coping with misophonia on a day-to-day basis. What I’ve found that works for me is to turn up the music/TV, wear headphones or earplugs, and, in extreme cases, leave a room entirely. It’s depressing at times, especially when I want to spend time watching a great show with my wife, but I can’t enjoy it because I’m focused on her chewing, the very thought of which has me worked up right now.

I’m sure I’m not the only one who had the belief that this was something they could control, and I hope that this reaches those people. It’s not something that I’m doing wrong, and it’s not something that the person making the noise/sound is doing wrong; it’s something that I’m just not able to process or handle. Knowing this has given me the courage to tell my friends, family and co-workers why I need to have the TV up way too loud or to politely spit out their gum while I’m in the room. I’m thankful that everyone around me has been accepting so far, and I hope that, if you’re suffering from misophonia, you have the courage to do the same.

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We are all gathered around the table for dinner. Forks scrape across plates, mouths chew, drinks are sipped and runny noses sniff. Just one of these noises alone is enough to drive me into a frustrated breakdown. When I tense up “randomly” during dinner or have to get up to refill my water more times than necessary, it’s not because I don’t appreciate the beautiful gift of gathering around the table. It’s simply because I need just one minute of silence.

daughter and mom

I have a condition not many people seem to know about called misophonia. Misophonia has become a part of my day-to-day life since I was 13 and has seemed to progressively expand its library of trigger sounds along the way.

When I hear a trigger noise, my body engages in a knee-jerk reaction, such as flinching or tensing up. Depending on the loudness, severity and duration of the noise, I have fight-or-flight reactions, ranging from rushing out of a room to remaining there as tears stream down my face.

Misophonia makes it hard for me to sit through meals with my family no matter how much I love them. While we eat, my mom always makes sure there is music playing so I have a distraction, and my family tries to be extremely patient with me even though they don’t understand why I am getting worked up over something as simple as a noise.

I can’t sit through a movie in a theater because people around me are eating their popcorn, and it’s all I can focus on. I’ve had to switch classes from lecture halls to online courses simply because someone sniffed, and I knew I couldn’t sit for an hour a day, three days a week in a room of more than 100 people and remain calm. I take my tests in a special testing center so I might actually have a better chance of concentrating on my test with a lower number of possible trigger sources surrounding me.

Misophonia is not something I can just “get over” or “take some deep breaths” to deal with. Instead of telling me to relax or grow up, take the time to ask me what I need. Take a minute to ground me or let me take a minute for myself. I have to try a lot harder than most teens my age to be able to tolerate being around people, but I am trying.

Claudia LaGarde.2-001

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We met when I was healthy. You snuck me away from a party to light tennis balls on fire in the middle of some field we traipsed through. I still have the scars from the thorn bushes that caught my ankle as you carried me on your back toward the house. You never meant to leave scars, only memories, you said. I am not sure whether I met you by chance or if it was meant to be, but the instant you walked into my life, I felt my body exhale in relief. “Here is someone genuine. Here is someone who is good,” it breathed.

A few weeks later, we got into a car wreck. “You should have died,” said the officer as he looked at the car, slammed backwards against the guardrail. You were afraid, but you stood there like a lighthouse, holding me until I could breathe again and making jokes when the waves let up. You taught me how to be strong in the face of tragedy and fear.

Summer came and I helped you move to the city. You didn’t fit in there and neither did I. But you stuck it out, studying day in and day out for the MCAT. Your determination and dedication inspired me more than you know. I can’t tell you how happy it made me to sit in the library with you while you studied away. I learned more from you than just medical terminology and physics. You taught me to make sacrifices. You reminded me that I don’t have to do what everyone else is doing.

As summer came to a close, we went to the fair. The pain came out of nowhere, and at the time I could have sworn I was dying. I passed out in your car as you drove me to the emergency room. I remember hearing the concern in your voice as the world faded to black. You waited there all night and helped me home. In the morning you made me call my mom even though I didn’t want to. You taught me to stand by the people I love no matter what, to help others and to help myself.

When Christmas came you took me to Leavenworth to see the Christmas lights. I was very ill and tired then, but for a few hours I didn’t feel like a sick person. You gave me a memory I will cherish forever. I never knew how to thank you. You built me shelves and bought me plants when I couldn’t see through the devastation and loss my illness had left me to face. And when the treatment went wrong and I became someone I could no longer recognize, you were there when you could be and encouraged me to keep going when you couldn’t. You got me through it.

Summer came again and I got better for a while, but I was not the same. I was bitter and I was unkind to you. I wanted you to understand something you couldn’t. I wanted you to be there when you couldn’t. I resented you for it. I want you to know how sorry I am, that I missed you on my birthday, and that even though I did everything I wanted to, it wasn’t the same without you. In your absence, you taught me how to love you unconditionally.

When the leaves began to fall, I began to fade out of the life I had created in the summer heat. I was sick and this time it had a much quicker agenda. I lost my mobility, my job, my independence, my purpose and myself. I went from coaching gymnastics and hiking everywhere to being unable to function. Just getting out of bed became a huge feat and I relied on a cane. Doctors were unable to help. I felt lost. So I sent you a text.

You met me for coffee. To be honest, I was nervous. I felt guilty. You were there, though, and that was all I really needed. I was reminded of everything you had taught me the minute I saw your face. I started writing, reaching out, helping myself. I learned how to live with my illness instead of in spite of it. You don’t know this, but you make me want to be more, do more, live more. Keep fighting.

Yesterday I sat beside you on the couch. You handed me a gift and after you made sure I knew you had wrapped it yourself, I unveiled a lightbulb that I could control with my phone. “The gift of light,” you said. You then spoke about how it could offer light in the darkness, how shedding a new light on a situation can uncover new paths, and of course that it matched (and one-upped) the color-changing candles my parents had gotten me one year before. By the end of your speech, your voice caught in your throat and tears were streaming down my face. As you hugged me, I felt my body exhale in relief. “Here is someone genuine. Here is someone who is good.”

You gave me the gift of light, but what you don’t know is that you are the light. Written above are only a few examples of just how incredible of a person you really are. I don’t know how to thank you in a way that encompasses just how much I appreciate the fact that you even exist, let alone that I got to meet you and that you are a part of my life. There are no words. So thank you for all that you have done and will do, but mostly thank you for being you.

Thank you for helping me withstand the unimaginable.

A snowy outdoor landscape with Christmas lights decorating the trees

Follow this journey on The Cane Effect.

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