Side view of a despaired woman sitting curled up in nature.

When Misophonia Kept Me From Grieving the Way I Wanted To

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I have lost a lot from my disorder. Misophonia causes a fight/flight/freeze response to visual and audial stimuli. Whistling, chewing, leg-tapping, and other normal events become noxious to me. It is painful. There is no “ignoring” this. Once my amygdala faces a trigger, there is only escape. If I do not escape, the pain builds. Since this is accumulative, if I do not escape, I can end up with a migraine. I can get sick.

This week, I have lost something much greater, much sharper, much harder to deal with. A woman I love dearly, and will with every breath that goes forward, passed away. I come from a Catholic family, and grieving is something not only expected but enshrined in community.

News surrounding misophonia mostly focuses on “chewing rage,” on the family impact, or on the inability to comply with day-to-day life-events. Misophonia, in this outreach, has gone beyond that. It has taken away my humanity, my ability to say goodbye to someone I love.

Unlike many I have talked to, I have not had misophonia my entire life. Some consider this lucky. I do not wish to discuss the implications of childhood vs. late-onset. That is not part of this story. The story is that I have buried many loved ones. I have been present at funerals, wakes, and have taken part in the grieving process. I know these events do not “solve” death. What I have learned from wakes and funerals is that to move on from death, and the loss of a loved one, we must be together.

As an advocate I have talked about misophonia’s impact on my life time and time again. I feel as though I have a deep and meaningful relationship with coping with this disorder. I feel failed by all of this. I feel lost, sad and scared. More, I feel as though I have had an important spiritual and life event stolen away from me.

I must move forward on a path of grieving that redefines my views. I am trying to move forward and respect the life of a loved one without being able to fully engage with her loved ones. I am trying to move forward, alone, in a way that respects my love for her. I don’t know how to do this. I do not know how to sit alone in a room and quietly show loud respect for a woman who I believe deserves better from me. I wish I could have sat there in the room. I wish I could have shared in the grief of family, friends, and other loved ones. I could not.

I am grieving her loss. I am grieving my loss of grieving. I feel guilty for not grieving “properly.” I feel guiltier still, that my own problems have overshadowed my grief for her. I know there are no answers. I feel lost, and I feel sad.

This is not necessarily a story of hope; it is a story of loss. Loss of self. Loss of love. It is a story of finding meaning in a silent room. I know her love surrounds me, but I do not know how to share this without being able to face a crowd. What I do know is disorders are important. I know it is important to show love and kindness to others, especially those in pain. I know this because people like her have taught me. As a nurse, Anne-Marie showed me kindness and compassion have the power not only to change the world around you, but the whole world.

Disorders like misophonia require constant advocacy. The world does not know us. We are not merely patients; we are people in pain. We are humans who are loving, losing, and finding new ways to find love for each other.

As advocates and as people, we must ensure the world we are creating is one that has more love for others. We must realize that even when we do not have the answers we are capable of caring for each other. Even in our struggles, we must understand that if not for people and if not for love, what are we fighting for? While I may not be able to mourn in a room full of others, I can profess my love to the world. I can tell the universe that she was here. I can tell the world that her love now lives in all she’s touched and will continue to grow and change the world.

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Thinkstock photo by Akilina Winner

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My Misophonia Doesn't Mean I Hate Sound

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As a rare disorder, I’ve found misophonia has garnered press and attention that may not be reflective of its true nature. I’ve seen those with misophonia often painted as hating sound, being angry, or even being overly depressed and withdrawn. The truth of these statements depends on the individual. We cannot paint each individual under the same brush — and even if we can, the meaning is often far deeper than these sweeping statements.

Some of us who live with misophonia can struggle with much more than sounds; we are constantly berated by the stimuli around us. Sights, sounds, smells, textures — it all can contribute to an overactive amygdala and a body and brain that just aren’t connecting. Research is greatly preliminary, but that does not mean we are completely lost. So far, there has been a lot of focus on the sounds, but another realm — sensory over-responsivity — has also been researched for years.

I, and many others, do not hate sound. I hate the feeling of being triggered. I hate sitting for dinner and suddenly feeling assaulted — like the jolt of a bullet when my partner crunches down on crisp toast. I hate that I am isolated from events when my triggers get too overwhelming. I hate that I cannot go to traditional school because a classmate may constantly be jiggling their legs. I avoid the bus because of passengers chewing gum. I feel trapped in shopping malls with bright lights and strong smells. How about church? Perfume can ruin that, too.

My senses are taxed beyond all sensibility. I cannot sit there and “get used to” the noises, the visuals, the scents. My brain cannot handle it. My filtering system is broken. When a person without misophonia (or auditory over-responsivity) is faced with a sound they do not like — say, construction and drilling — they may first feel a “jolt.” They may be startled by the noise. Where is it coming from? Who is doing that? What is it? Is it safe? Their fight/flight response may be aroused briefly, but oftentimes they eventually consider the sound a part of their “new normal” after identifying the source. For a person with misophonia, this generally does not happen. Each time the sound (or visual) happens, it can be like a gun is going off. Even if we rationally know this sound will not hurt us, our sensibility cannot save us from our amygdala’s fear response. Our brains are simply unable to compromise. We may know it is safe, but on a deep physiological level, we cannot change our reaction.

There is no hatred in the amygdala. It is a response deep in the brain. We may develop emotions because of this reaction, but it is not the entire story. Those of us with misophonia can experience what may compare to a computer malfunction. When doctors and therapists suggest methods such as CBT (cognitive behavior therapy), I feel they are gravely misunderstanding the problem. I believe this sort of therapy would be so ineffective that it is comparable to reinstalling your operating system to fix a cracked monitor. Worse though, it may have a negative effect. I’ve observed that sensory disorders (with the little research we have) are likely worsened by exposure. The accumulation of triggers can make us worse for the wear.

Many with this disorder can face consequences if they “suck it up” and just go along with the triggers. One particularly terrible consequence is migraines. Personally, if I am exposed to stimuli too often, it is like a threat meter going up and up. If it reaches its maximum potential, I become ill. I feel nauseated, lethargic and sore. If I let it go past there, even if I get out of the situation at this point, I am likely to get a migraine. The longest I have had one because of this disorder is four days. There is evidence that migraines, when frequent, can cause permanent damage.

We are not just people who cannot handle the world around us. We are people who are struggling. We can struggle even more when mistruths are spread. We are struggling because doctors, therapists and family members need to identify this disorder as real. We need to be recognized, and we need to foster a world where education comes before media spectacle. We are not “sound rage.”

Image via Contributor.

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What It's Like to Have Misophonia on Christmas Morning

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Wake up, it’s Christmas morning! That means it’s bound to be a great day full of carols, family, food, and presents, right? Wrong. It’s about to be one of the hardest days for someone like me who has misophonia.

7:15 a.m. All is fine in the world… so far. You walk into the living room and wait for the rest of the family to wake up so you can partake in opening Christmas presents. You enjoy these last solid few minutes of peace and quiet because you know, at any moment, someone is going to come in and disturb the stillness.

7:22 a.m. See, that didn’t last long. The youngest of the bunch is awake finally and the family is ready to rip open gifts. The dreaded sounds of paper tearing open, the crunching as the paper gets crushed and thrown aside, and sometimes there’s even bubble wrap to pop. Joy. But you smile through the noises that are killing you because 1. This is family time 2. Your family will just think you’re being rude anyway, and 3. How do you explain that noises make you genuinely angry?

7:45 a.m. By this time, all the presents should be unwrapped. In my family, that means it’s time for stockings! This is the worst of all. Why? Because there are snacks in the stockings. That means now you have to listen to wrappers being slowly opened while you wonder, “Why can’t you open that any quicker?! Why can’t you open it more quietly?!” It only gets worse. Everyone suddenly seems to start smacking their lips, crunching loudly, or chewing at a volume that shakes you to your core. “Chew with your mouth shut, please,” is what you hope comes out of your mouth, but at this point all you can really say to your brother is, “Why can’t you chew with your mouth shut?” It’s not your fault that it came out rude, but no one is going to understand that.

8:30 a.m. As if stocking snacks weren’t enough, now it’s time for breakfast. More smacking of lips and utensils scraping against teeth. This is why you’ve mastered the art of eating either quicker than or less than everyone else so you can leave the room to get away from the noises, but you play it off as though you’re going to go check out some of your Christmas goodies.

Fast forward into the day where you head to your extended family’s gathering: More presents. More paper ripping. More paper crumpling. More snacks, lunch/dinner, smacking, chewing, and the list goes on and on in a vicious, repetitive cycle.

The only hope today is the silence you find comforting when you make your little escapes to another room, outside, or the bathroom. Peacefulness is waking up before anyone else just to enjoy the first few minutes of quiet on your Christmas morning, and restfulness is when everyone goes to bed at the end of the day as pleased as possible and you finally get the rest of the night to regroup. The day will have been hard, but you survived! You made it!

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Thinkstock photo by Sebastian Gauert

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My Misophonia Is Not 'Chewing Rage'

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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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Lead photo source: Thinkstock Images

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We Need a Better Understanding of Misophonia

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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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Image via Thinkstock Images

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When I Realized Why Mealtime Noises Make Me Irritable

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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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