I Thought I Was Just a Mean Person, When Really I Had Misophonia

790
790
47

Growing up, I always used to warn my friends not to eat gum around my mother. I did not know why, but whenever my mom heard someone chewing gum, she would beg them to spit it out. I thought she just had super sensitive ears.

It started with me constantly gauging if my friends were loud gum chewers so I could warn them that if they were ever around my mom, they would have to spit their gum out. Somehow, this manifested into my own hatred for gum chewers. At first I thought it was sympathy pain for my mother. Then suddenly I realized I was starting to become agitated with sounds other than gum chewing. People tapping their feet, clicking their pen, whistling became unbearable. I would hear these sounds and instantly become filled with hatred for these people.

You know how when you ask your younger sibling to stop kicking the back of your seat when you are in the car but they continue to do it anyway because they think it is funny? Even though there are a solid 30 seconds between each kick to the back of your seat, you are annoyed because you are just anticipating the next one. You can’t focus on your movie or book because you can’t just not feel a kick to the back of your seat. Now, imagine that younger sibling is capable of kicking the back of your seat anywhere you are — the classroom, the library, while you’re walking on the street, while you are trying to sleep. I knew the people around me weren’t trying to annoy me, but I could not help but feel that same disdain felt towards an annoying sibling kicking the back of my seat.

I remember being in third grade in math class and a boy next to me began to tap his fingers on the desk one at a time. First his pinky would hit the desk, followed by his ringer finger, then his middle finger, then his pointer, and then he would repeat the cycle. I knew he was not doing this to annoy me, but I could not focus on anything else in class besides his fingers. I asked him if he could stop because the sound and visual were distracting to me, and he responded by calling me a freak. People in class heard my request and his response and they all laughed. He didn’t stop. Other people thought it would be funny to follow his league and play the invisible piano on their desks. My heart raced, the tears filled up behind my eyes, and I shook with anxiety.

Now jump to high school. I did not want to be labeled a freak so I would sit in silence while the people around me ate chips, tapped their feet, clicked their pens, and chewed gum. My only way to release the anger was to vent it out to the very public platform of Twitter. People who followed my Twitter would tell me how funny my tweets were. Then people began to catch on when I wrote tweets like, “Ugh, the girl who sits behind me in sociology chews her gum like a farm animal.” Do you have any idea how awkward it was when this girl asked me why I tweeted about her? I had to come up with a different way to address my annoyance. So, I began to tell people, “Hey, I have this really weird thing where I hate (insert whatever they were doing), do you think you could stop?” This usually worked well, until once a girl said to me, “Why don’t you just move seats?” to which I responded, “Because I would still hear it across the room because you chew like a cow.” Oops. Why couldn’t I just be nice? Why did I have to snap back? Why did I feel personally attacked when someone told me they did not want to stop? I knew they weren’t attacking me; they just wanted to chew their gum or eat their sandwich in peace. I began to accept that I was just a mean person who hated the world. I knew I would hate me too if I met me. What kind of person demands others to stop doing things they are entitled to do?

Flash forward to senior year in high school when my mom told me “our weird hatred of sounds” has a name. It is called misophonia. I looked it up on Google, Twitter, and Facebook. I realized my mother and I were not the only ones in the world who could not control our emotional responses towards sounds. I found a Facebook group called “Misophonia Support Group” where others would share their experiences of anxiety, rage, and depression all because of sounds. I was so relieved to know I was not just a mean person. I had a condition I could not control.

Today, I still struggle with the condition that plagues my daily life. I avoid situations where I can’t escape in the event someone chews or taps. I have had seven panic attacks on planes alone. I feel trapped in a world where I have to suffer in silence to avoid being called a freak or a bitch. I wish I could just ignore sounds. I wish I could explain this condition in a way that made sense. I want to be “normal.” I want to be able to sit in a room without having my day ruined because I heard a clicking pen. But I am not alone. There are others. I just wish people knew I can’t control my emotional response to sounds. I am constantly living in that 30-second interval before the next kick to the back of my chair.

We want to hear your story. Become a Mighty contributor here.

790
790
47
TOPICS
JOIN THE CONVERSATION

When Misophonia Kept Me From Grieving the Way I Wanted To

9
9
1

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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Akilina Winner

9
9
1
TOPICS
JOIN THE CONVERSATION

My Misophonia Doesn't Mean I Hate Sound

132
132
0

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.

We want to hear your story. Become a Mighty contributor here.

132
132
0
JOIN THE CONVERSATION
young girl has headache of christmas stress

What It's Like to Have Misophonia on Christmas Morning

16
16
10

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!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Sebastian Gauert

16
16
10

RELATED VIDEOS

JOIN THE CONVERSATION

My Misophonia Is Not 'Chewing Rage'

153
153
3

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.

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images

153
153
3
TOPICS
JOIN THE CONVERSATION

We Need a Better Understanding of Misophonia

234
234
2

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.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock Images

234
234
2
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.