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To the People I Love…

by Sensory Diversity June 25, 2016

written by Sensory Diversity

I realize that you have noticed odd behavior in me, and are worried. I know, that you know, that something is wrong. You love me, and want the best for me. You see that I am unhealthy, an underachiever, and reclusive. No, I am not on drugs, except my prescriptions. Yes, my mom mentioned to me that several of you have inquired about my symptoms and appearance, and I do not blame you. I know I look concerning. I have been too embarrassed, to tell you what was affecting me, and honestly, I believed that you wouldn’t truly understand, once I told you. You may have noticed my acting funny, or rude, and you may have even gotten sense that I am hiding something. I absolutely am. I have been hiding how deeply, a simple brain tick has broken me down further than I fear I will ever have the strength to build myself back up, but I am still trying. I downplay the impact, and avoid it, in person, mostly, for myself, but no one can deny, that I have, literally, dwindled down to pretty much nothing, and become stagnant.

I have a disorder.

I drive myself insane, trying to avoid sniffing, chewing, coughing, and various other everyday ambient sounds, visuals, and feelings, because of the way it affects my mind and body. This is an extreme, and constant chore. I have become a jumpy, eagle eyed, contortionist, which causes, anxiety and stress, and gives me headaches and body pains. I don’t want to be this way, but I realize I was just born sensitive, which encompasses many different types of sensitives, that I have to overcome. That is how I have to live. I started struggling, consistently, in school, once I hit puberty, around 5th grade. However, after I graduated from high school, while coming into adulthood, adding so many new responsibilities, and starting college, at the same time I was battling my own mind, I went into shock. I had an extremely hard time processing and adjusting. I basically shut down, and hardly took care of myself. I became very depressed, unhealthy, and my sensitivities became exponentially worse. If you want to know why I spend most of my time, staying in one place, doing a handful of the same things, and avoiding all human contact, it is because, that is the only way to lower my chances of being uncomfortable and stressed. I have learned to fake, what I call, “peopling,” but can only handle so much before I am over stimulated, and just want to go back home to peace and quiet. Which only makes me lonely, bored, and then sad, perpetuating my depression.

This is a real, and life changing disorder that is highly under-researched.

There are millions of people out there like me, with very similar, depressing stories of “unusual” sensitivities, and alienation, I have personally spoken to quite a few, and there are countless testimonies online in support groups. The scientific community has begun to take interest, finally, within the past twenty, or so, years. This disorder is only, now, in the beginning stages of research, and still doesn’t quite make a whole lot of sense to anybody, especially those suffering from it. However, that does not change how detrimentally seriously, these weird sensitivities affect me, and others like me.

Please, stop reminding me about my health.

I know that I am underweight, and I am consciously trying to change that, but the extreme amount of stress and anxiety my body undergoes, is counterproductive. Plus, my lack of drive to do anything at all, poses an obstacle. I suffer from depression, that I constantly try to distract myself from. I go back and forth between being extremely productive, “people-y”, overwhelmed, and stressed. Then, on the flip side, I shut myself in my house for days and watch Netflix and lollygag on the internet, hating myself for being such a freak, and an outcast. Thankfully, I can go to work, and hang out with kids all day long, because they don’t really tend to trigger me (I can make them blow their nose if need be.) Plus, it makes me feel good, knowing that I am positively influencing their lives. However, overall, this is not the life I want to live, but I am trying to do the best that I can, with it. Now I know what tools I was dealt, and I’m aware of my unique set of sensitivities.

I am educating myself, and have a plan.

Have begun taking calcium, iron, b-complex, and drink a protein shake in the morning. I eat 6 meals a day, high in protein, stretch and take care of my body, so that I can feel better overall. Even if it hurts, it takes effort, and I have zero drive to do anything. I know that the better I feel, more able I am to handle the extra stress my body and mind takes. I have been practicing more targeted coping methods, and investing in better quality earplugs and headphones. I don’t know what the future will hold for me, but now I know that I am in control of it, not my disorder. I am still human. I am my parents’ child, and the product of my family. I am relentless, and refuse to be a victim. I will come out on top. My sensitivities will not define me.

“I paced around for hours on empty
I jumped at the slightest of sounds
And I couldn’t stand the person inside me
I turned all the mirrors around

I’m bigger than my body
I’m colder than this home
I’m meaner than my demons
I’m bigger than these bones”

“Control,” by Halsey

To the people I love… I need your help.

Please, don’t be mad when I act peculiar, avoidant, or seem panicked, that only makes me mad at myself, and creates a bigger challenge when calming myself down. I don’t expect you to walk on eggshells, but if you could simply be conscious, and understanding of what bothers me. If you could even warn me, or avoid it, and then not dwell on it afterwards, that would be extremely relieving for me. I just need help, to be strong, overcome my disorder, and take control of my life. I need to feel validated. Help me and support me, instead of knocking me down, with good intentions, and a partial lack of understanding. I would be a lot happier, and a lot more fun. Please educate yourself about Misophonia (my aversion to sounds) and Misokenesia (my aversion to sights). Also, anxiety, depression, agoraphobia, and OCD, that I have been diagnosed with.

I will be sending this out, to those I love, and I hope that it opens up dialogue between us, and shortens the distance I feel from you. Mental illnesses, and disorders are always the elephant in the room, when all that does is create tension, anxiety, causes stigma, and divides people. Now that I am more comfortable talking about myself, you will get tired of hearing about my struggles; I get tired of experiencing them. That’s the whole catch, about it being a life altering disorder. Life is going to be an interesting experience for me, and a lot of things scare the hell out of me, for both sensitivity related reasons, and natural human fears. I hope that I am surrounded by understanding, support, and love through all of it.

June 25, 2016 0 comments

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How Should We Act When We’re Being Triggered?

by Sensory Diversity June 23, 2016

written by Sensory Diversity

I must confess, like most if not every person with misophonia, I’ve had violent fantasies when someone makes a trigger noise. Despite my usual positiveness about getting through my days with misophonia, I can’t deny the fact that I have violent fantasies as well. “How do you deal with that?” One may ask. I’m not one to tell everyone what they should do to deal with someone triggering them, but through my personal experience, I’m hoping people will at least take it to heart.

I am currently in a choir at my local church. Every now and again, someone from the choir triggers me, whether it be my fellow choir friends or the director himself. When that happens, depending on how bad my misophonia is that day, I imagine grabbing the music stand and hitting that person with it to shut them up. Or I imagine grabbing the back of the person’s head and slamming it into the music stand several times. It gets pretty graphic. In real life, of course, I wouldn’t do that, ever. I love all of my friends in choir and couldn’t imagine hurting them. But having misophonia leads to very violent thoughts, and I feel horrible for thinking them.

Never have I gone up to a person and told them “Please stop breathing that way, you’re triggering me” or “Please eat quieter, you’re triggering me” or “Please leave, your mere presence is triggering me”. To me, that’s just rude and uncalled for. I have, however, informed most people I know about misophonia, and I feel a little better once they know about it. It encourages dialogue about it and gives me the chance to refer them to this site, Misophonia International, so they can have a better understanding by reading other people’s experiences.

Some people, however, have other unhealthy and unacceptable ways to deal with people who trigger them (in my opinion). I have seen people post pictures of their triggerers–is that even a word?–and call them terrible names. I’ve seen normal “vent posts”, which I normally scroll past if I don’t want to read it, describing their violent fantasies about the person triggering them, how rude they are, and how they should learn some manners.

I can completely understand how someone with misophonia can say “they need to learn some manners” because certain sounds fill us with rage, and to the ordinary person, they don’t realize the sound they’re making is causing such discomfort. And that’s the key. They don’t realize that. Rather than post a picture and bullying the trigger person behind their back, I believe a better way to act is to start a conversation. If that seems daunting, simply don’t post a picture. Just vent about it, turn up your music, and be done with it. The reason I feel strongly about this is because I have been bullied several times behind my back. It’s not right to post a picture of someone and say “learn some manners you ignorant [insert uneccessary bad word here]”, because they don’t know you’re being triggered.

Once again, this is all my opinion. What you choose to do with it is up to you. Because I’ve been bullied, I don’t like seeing other people bullied. How we act when we’re being triggered by someone will give either a good or bad impression of people with misophonia. I’m not perfect. I make a face, I sigh, I leave if I have to, I mimic the sound, my face goes red, and I want to shut that person up. But in the end, it’s not that person’s fault. They don’t know we have a neurological disorder. Only by educating other people will we get anywhere. Education > Public shaming/bullying with a picture.

June 23, 2016 0 comments

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Coping

Misophonia Is Not One Size Fits All

by Sensory Diversity June 21, 2016

written by Sensory Diversity

Having lots of friends that have Misophonia has been an eye, and ear-opening, experience. Many times we can become egocentric through our struggles with disorders. Definitions such as “hatred of sound” try to paint us all with a broad brushstroke. In truth, we are complex and different. Each and every one of us has different triggers and experiences. The reactions are similar, this is true. It’s hard to differentiate between our fight/flight response and our aversive nature. This aside, we are different. We are unique. Most importantly, we are human.

Whilst eating on skype I’m now hyper-vigilant. Some friends are triggered by chewing and others are not. Some, tapping and pens drive them crazy. For me, loud noises, chimes, and whistling become a major disturbance. These differences have taught me valuable lessons. We cannot all escape into one branding or meme of our disorder. This is why when some one insults our disorder they are not just doing injustice to each and every one of us, but to our individuality. We are not all the same and we wouldn’t want to be. Films like Jeffrey Gould’s “Quiet Please…” are a reminder that we are not just sufferers, we are people.

Over the past year I have met some amazing individuals. Writers, musicians, mothers, fathers, and university students alike. Each person I have met shares their own story and difficulty. They are not defined by their disorders but by their choices. That aside, this disorder has an impact on what we can give to the world. We need to ensure that we are acting to help promote research and that we’re raising awareness. I leave you with the words of another suffer, her original article shown here:

When the trigger starts, I feel my brain is searching the area to hear the sound again. Is it there? Is it not there? Do I hear something? When it does, it locks on that direction. Then it’s almost all I can hear. The expression that comes to my mind about this is “target fixation” (I got that from motorcycle riding but it fits). After that I split in two. One part of me is looking for ways to avoid the sound and the other wants to keep hearing it…it’s like a part of me wants to get annoyed… and angry… and furious. I grit my teeth and make fists with my hands. Sometimes I bang the desk in front of me (if there is a desk) before realizing I’m doing it. I want to attack the source and scream. I glance angrily, I feel… possessed. My breathing changes and I really hate the source. — Alkisti, Athens

If you want to share your story you can feel free to submit here.

June 21, 2016 0 comments

Coping

Reading: My Escape From Misophonia

by Sensory Diversity June 20, 2016

written by Sensory Diversity

I’ve always been an avid reader. My parents always encouraged me to read and to especially read books that I was interested in. From the novels, I love reading fiction, fantasy, mystery, and thriller. I also developed an interest in mangas (Japanese comic books and graphic novels), and read several online, as well as borrowed from my friends who owned some. But when I started college two years ago, I was only reading from my school books and not much else. Eventually, I got into the habit of hardly reading at all. However, I recently went to Viejas, which is close to San Diego, and bought a new manga at Barnes and Noble called Death Note, which is what you see pictured.

I was so excited when I saw the Death Note manga because I had read some of it before. I was even more excited when I could buy two volumes in one book! I’m already more than halfway through and I’m positive I’ll invest in every volume after. 🙂 Just a short explanation on what Death Note is: “Light Yagami is an ace student with great prospects–and he’s bored out of his mind. But all that changes when he finds the Death Note, a notebook dropped by a rogue Shinigami death god. Any human whose name is written in the notebook dies, and now Light has vowed to use the power of the Death Note to rid the world of evil. Will Light’s noble goal succeed, or will the Death Note turn him into the very thing he fights against?” If that doesn’t pique your interest, then I don’t know what will! Since reading that short introduction years ago, I’ve been wanting to read the manga for so long, and now I finally am. Can you tell how excited this makes me?

The only thing about reading, for me, is that I need silence. No one needs to be talking, or else I can’t concentrate and I can hear every single trigger. If I’m bored in a public place, however, I can play some brown noise and concentrate on my book/manga that way, but the brown noise is still distracting. If I’m in my room, I put my fan on to combat the ringing in my ears (tinnitus).

I read to escape reality, especially to escape misophonia. Reading takes me into a magical world of dragons, warrior cats, solving mysteries, and the wizard boy who survived and defeated the Dark Lord. It makes me forget that I have misophonia, and lets me imagine a world that doesn’t trigger me. I have my parents to thank for making me read so much. Everyone needs something that’ll make them forget for a little while. I personally recommend choosing something healthy, like reading, photography, singing in a choir, and/or writing, but it’s all up to the individual. What’s your escape?

June 20, 2016 0 comments

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Personal Stories

A Day in the Life of a Misophone

by Sensory Diversity June 19, 2016

written by Sensory Diversity

As I have previously mentioned in another article, I try to start my day on a positive note. I wake up, stretch, take my vitamins, my generic Lexapro for anxiety, and a pain reliever for my joint and hip pain. I eat breakfast, and then I do something busy and productive, to fully wake up my mind. Only then, am I mentally ready to start my day. If have to go out of the comfort and solace of my home and be a human that day, am constantly talking myself out of anxiety. I know it sometimes is irrational, or unneeded, but it is still there, and I have to consciously get rid of it. It is a waste of my time, and is mentally exhausting; I know this, and I am disappointed in this, as well. I just try to focus on breathing and thinking positively.

I work at a preschool 5 days a week, from 8:45am to 3-5pm. So this means being in a classroom with 5-6 toddlers that don’t tend to sniff, they just let the snot roll right down their face, and I just wipe it off. Also, their chewing and eating noises don’t bother me either, I actually, find it cute. Usually, I just drive straight to work, go directly into my exterior classroom door, and then mentally prepare myself to walk into the main entrance with everyone, sign in, and get a fresh bleach and water bottle to clean the lunch and changing tables. However, today, I had to stop by a dollar tree on the way in, to get a drink, a hair tie, and some marshmallows for an art project I wanted to do with my class. It was camping week and I was going to let my kids paint a fire, using marshmallows on a stick.

I walked into the store, pensively. The cashier greeted me in a nasally voice, so I kept walking, quickly, away from her. No thanks, potential trigger. I walked over a few isles to the hair accessories, grabbed what I needed, and started over to the food to find marshmallows. On the way, I noticed that the store was pretty busy, to be 8am, I spotted a larger woman with her kid, an older couple, maybe in their sixties, and a younger man with very long hair. I rushed through, finished my shopping, took a deep breath, and approached the nasally woman at the register. Things were going fine, I was having minimal anxiety, and doing a good job staying calm around all of those people.

scream Until, the reality of my condition set in. The larger woman and her kid had gotten in line behind me, and right in my ear, she produced the loudest, grossest, most booming and reverberating sniff, I had ever encountered. A jolt of shock rushed through me, and my blood ran cold. I couldn’t leave yet, I had to pay. Money. The nasally voice was asking me for money. I don’t even remember what happened next, except for incessantly and ridiculously sniffing, myself, until I got out to my car. I found myself sitting in my car, for five or ten minutes, yelling and cussing at the woman for subjecting my ears to such a cacophony. Its all I could hear in my head, so I had to smack my ears to get rid of it, and scream to get the adrenaline out. It is only 8:30am.

At work, I am occasionally greeted with a few triggers by coworkers, parents, and sometimes children, but it is usually manageable. I will either retreat to my classroom, turn on music, or politely rush them out of my classroom. There is, however, a specific coworker, that I hate to admit, I actively avoid. She is a very sweet lady, but I cannot stick around her, because she is a chronic sniffer. Chronic sniffer is a term I use for people that sniff at least once every ten or so minutes. I hear her in passing, in staff meetings, through my old classroom walls, when all the classes were napping, and she was on her break in the hallway. There is a little anxiety about being at work, but like I said, I just take deep breaths, stay positive, and have fun with my class.

If I’m not working, and still have to go anywhere, it takes lots of mental preparation and self motivation. Running errands, making appearances, hanging out with family, or anything that involves being in public, or around others, inevitably gives me some degree of anxiety. Doctors, and dentists offices, or waiting rooms in general, are the worst, but especially when everyone waiting is sick. Restaurants are stressful, and quiet settings like church, school, or libraries are petrifying. No matter what I tell myself, I am gun-shy and stressed, anytime other people are around me, or even on the phone with me.

I find that it is easier to deal with a trigger when I can see it coming, and mentally prepare, so I am constantly on the lookout for a sign that a potential trigger may occur. This causes me to be slightly distracted, odd, and too observant. Being so hyper vigilant is draining, and the constant intake of stimuli is too much for my system. By the end of the day, I am exhausted, and strung out from Misophonia alone, on top of normal human stress.

5835131886_cd3f094d91_z All I can do is fake a smile. “Fake it until you make it,” right? I refuse to let myself be depressed. Yes, my disorder beats me down many, many times through out the day and makes me feel stupid, and crazy, but I know that I am not. I’m bigger than my disorder. Sometimes, when I am triggered, I am so exhausted, that all I can do is just laugh. It’s a frustrated, exaggerated laugh, but it is all I can muster. I go to sleep at night with my mind whirring. My sensitivities cause me a lot of pain throughout the day, but it also allows me to observe and process more of the world around me. Fighting this battle just puts life in a different perspective for me. It gives me inadvertent strength, and courage, and a unique viewpoint.

June 19, 2016 0 comments

Relationships

Impacting The Entire Family

by Sensory Diversity June 12, 2016

written by Sensory Diversity

When you read this, you may think that I am the worst person in the world, and I don’t think I would disagree. This is the story of how Misophonia ruined my relationship with my mom. I ask that you please refrain from judgement. If you suffer from Misophonia, you will understand. If you are a parent of a child, who suffers from Misophonia, view my perspective as a window into the experience and challenges you and your child will face. Misophonia does not only affect the sufferer, but also everyone involved in their life.

Growing up, My mom was my worst trigger.

One of my earliest memories, was when I was about three or four years old. I was sitting with my mom, when she leaned over and told me, “I want to tell you a secret.” I was so excited! “A secret!?” I thought, “Mommy is going to tell me a secret!” I anxiously leaned in to hear, only for her to pop a handful of potato chips in her mouth and proceed to crunch them in my ear, laughing. I will never forget that day, or the anger, and hate, that I felt at that moment. I wanted to hit something… hard. I wanted to hit, or throw something at my mom. That’s terrible, but why would she do something so rude? Isn’t she supposed to teach me manners? Did she really think that was funny? From then on, things progressively got worse. Mom’s favorite lunch was peanut butter sandwich, potato chips, and a tall glass of Pepsi packed with crushed ice. All of these involved triggers for me. First, she would break ice cubes up with a spoon clanging the ice against the glass. Afterward, her ‘dessert’ was crunching that ice when the Pepsi was gone. When she would speak, the sound of the peanut butter residue lingering in her mouth made the most awful squishy sound. Cringe!Another big trigger for me was her voice and her singing... I never liked to have the radio on because she always wanted to sing along. She had a bit of southern twang that drove me over the edge, especially when she would mispronounce certain words. Even though I would correct her grammar, she continued her mispronunciation, and I was convinced she was purposefully doing it to annoy me. She would snap and say, “I can’t help the way I talk.” I was only asking her to use the word the correct way. Why couldn’t she just pronounce the word correctly? Why didn’t she realize how bad it distressed me? I’m sure she saw my pain.

Because of the torment, I would often run and hide in my room. “Why? Why does she have to crunch everything?” I would think to myself, “this is worse than nails on a chalkboard.” These sounds would send me into fits of rage. I would throw things, punch my pillow, or bed. Once, I even put my fist through the wall. No matter what I did, I was never able to release that anger, it only seemed to build, and fester inside me. “Why are you always so hateful?” she would ask me. At one point, I overheard my mom telling my dad, that she thought I needed tranquilizers. Could you imagine hearing your mother say that as a kid? All I would think, were things like, “Gee, mommy, that really couldn’t make me feel like any less of a freak,” Why did she hate me? Why didn’t she understand, she was so mean! No, I did not need a tranquilizer! I just needed her to stop these terrible noises. Why couldn’t she see that it wasn’t my fault? Why do these simple things affect me like this severely?

My resentment towards her grew with each passing day…

It’s a shame, growing up thinking you hate your mother, the woman who gave birth to you. This is the woman that was supposed to love, and protect me from hurt, but she was the primary source of my pain. Sure, I loved my mom because she was my mom, but at the same time I hated her, and I had no respect for her because of the way she treated my brain ticks. Most people have fond memories of their childhood, but all I have are negative recollections of anger, frustration, rage, hate, and disgust. In my late teens, my mom and I got in a big argument. She triggered me with something, and I exploded. She said, “If you do not have anything nice to me, don’t say anything at all” So, I took her seriously. Mentally, I had, had enough. I literally stopped all communication with her, and my life was very peaceful. It was great! For almost two years, the silence between us continued. Two glorious years of tranquility. I was confused, I figured that I would miss having a mom, but I didn’t. Whenever she would extend the olive branch and try to talk to me, I justignored her. Why ruin the peace and quiet?

Then, my father passed away. We had to make arrangements for his funeral; We had to talk to each other. We put a Band-Aid on our relationship. Shortly after, I decided to move into my own apartment, near her, but I did not see mom much. My visits were limited to mandatory holidays and an occasional phone call. Why would I intentionally subject myself to the aggravation? I knew exactly what would happen: I would visit, get irritated, get a migraine and go home hating my mom more than ever. I never invited her to my apartment either. How would I handle her triggering me in comfort zone?

Although, I thought she was the worst mom in the world, she was a wonderful grandmother.

So when my son was born, I wanted the two of them to have a close relationship. At the age of five he developed symptoms of OCD. While most people would chalk up his actions as bad behavior or tantrums, grandma learned what she could about OCD and would go above and beyond not to trigger his OCD. I always tried to limit our conversations to topics about my son and I always tried to do most of the talking so she would not be able to trigger me. It was still very tough for me to spend time with her and I would always leave her house in a very irritable mood. She drove me crazy, but she loved Kevin. I had to find some way to get past it.

With age, comes hearing loss. Personally, I was looking forward to this. However, when it hit my mom, she became a very loud talker, as if the frustrations with her couldn’t get any worse. She would get angry with me for asking her to quiet down. “Well, I don’t realize I am talking so loud, you could just tell me nicely!” However, I really couldn’t. The sudden earsplitting voice echoed to the pit of my stomach, sending shooting pangs of nausea, and tension, through my entire body. It was like an electric shock. I didn’t want to snap at her, it was just a reflex.

Between her coughing, labored breathing, and the clicking sound of her oxygen tank, it was way too much for me to be around. Anytime I tried to have a conversation with her, I always ended up frustrated and enraged. Why did I have to call her? It is her life’s mission to drive me crazy? I was not there for her last days; I just could not bring myself to visit her. I tried to go visit a few times, but I would just find myself pulling over to the side of the road, with a massive panic attack. It was physically impossible for me to go see her, the mere thought of this caused such severe anxiety that I was making myself physically ill from the anticipation of the triggers. This is not normal! Why can’t I just go see her? I told myself it was because I cannot deal with death, which is true, but there had to be more to my apprehension. What could it be? I decided that to go talk to a psychiatrist. During my intake appointment with the doctor, I mentioned that sounds and noises made me very upset and angry. I told him that, I mentally and physically, could not deal with them, but my words were disregarded. I guess it must be all in my head, how can I be such a monster? I was given a prescription for some anxiety pills, which did allow me to attend the funeral service.

I was sad that my mom passed, but at the same time I felt a tremendous wave of relief. This is not right, I should be more upset. My sister is falling on the floor in tears, and I have a few that occasionally will well up in my eyes. Is this my way of coping with death? My lack of emotion caused additional animosity with my older sister. I tried to explain the anxiety and panic attacks to her, but in her eyes I was just being selfish. I was never there. I just let her take care of Mom, on her own. How do you explain that your mother absolutely infuriates you, that being around her has given you thoughts of suicide, that you have chosen to avoid situations that make you feel as if the only way out is death?

Today, I know that I am not a monster.

I am not a bitch, I am not crazy, and I don’t have anger management issues. It turns out, that my whole life, I have suffered from a neurological condition called “Misophonia.” There is a medical reason which explains how I can go from the sweetest person in the world to the meanest monster in the blink of an eye. Misophonia… a name for the “sounds of torture” I have experienced my whole life. We all grieve in our own ways. I went through a period of going through everything, and getting rid of it. The doctor explained, that, for me, I was “purging my grief by purging my belongings.” It sounds strange, but it actually provided me with great comfort. To this day, whenever I try to think happy thoughts of my mom, all of those pent up emotions come flooding through the gates in my brain and I do not know if I can ever truly forgive her. Yes, I know it is not her fault, it was my condition, but it is pretty hard to dismiss the forty plus years of blame, hatred, and rage because of a simple brain tick. I cannot get those years back. I can never talk about a happy childhood. Misophonia has taken that away from me. This is something I need to process. Can I find the closure and forgiveness that I need? I am really not sure. This is something I need to deal with in my own way, in my own time. Now, I need to take care of me and finding ways to get through each day with Misophonia, until someone can provide me with answers.

In hindsight, the more I learn about Misophonia, the more I see that Misophonia inhibited any type of healthy relationship I could have had with my mom. If she had known I was suffering from a neurological disorder, she would have learned what she could to help me, and not trigger me. If she had known, maybe we could have had a healthy relationship. If only there were ways to prevent this for future families… I have chosen to share a very personal story with you in hopes that it will help you fight for a stronger relationship with the Misophonia sufferer in your life.

It was such a relief to learn that what I suffer from is not a flaw in my personality, and also, that I am not alone in my experience. There are other people that have the same thoughts and feelings, and have felt the way that I have. Many Misophones have similar relationships with members of the families. There are people out there, right now, that are undiagnosed and suffering in silence as I did: blaming themselves, hating themselves, and thinking they are the worst people on the planet.

This is why we are raising awareness.

June 12, 2016 0 comments

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Coping

Don’t be Afraid

by Sensory Diversity June 12, 2016

written by Sensory Diversity

sharron

Another writer for Misophonia International E-Magazine, Sharon graduated yesterday. She messaged the rest of the staff and crew, with concern about the actual ceremony. Not only was she triggered by one of the speakers, but there would be large congregation of people, which guarantees triggers, and automatic anxiety, for Misophones, in general. This magazine has featured an article before, written by Vicki Sladowski, from the position of a parent going to see her son graduate, and struggling to be mentally present for such an milestone event, because of all of the aversive stimuli surrounding her. During her graduation ceremony, Sharon wanted to wear her earplugs that play brown noise, because wearing them, was the only way she felt comfortable and calm, exposed to all of that same stimuli. However, she expressed that her family members may not be too keen about this, probably because it might look strange, and people could ask questions. Graduation are a big day, it should be filled with good memories, yet, neurological disorders do not let up for celebrations. For the majority of Misophones, every day is a day they face their disorder, days that are suppose to be positive and happy, are no different.

Misophonia is serious.

It is a big deal to get through school with Misophonia, it can be a nightmare, and seriously torturous. I would not have survived grade school without earplugs, and even still, I would have to take bathroom breaks often, just to cool down. I listened to music any chance that a teacher would let me, because sometimes I could hear triggers through my earplugs. I constantly looked frightened and annoyed, and was often very socially awkward. It is a miracle that I even graduated. I got very angry, and cried a lot, mostly in secret, because no one believed me when I told them that sniffing, chewing, coughing, tapping, and ticking, were causing me so much distress. I would get home and lock myself in my room. I constantly had loud music or a fan going to drown out my family, which sounds terrible. Growing up, and going through school is confusing, and difficult enough, but add an odd, and unheard of, brain tick, in the mix, its and makes for an even more exciting time, way too exciting, and stressful.

Misophonia causes me act freakish and odd, for far too long, I was ashamed and defeated and sunk into a dark place, but now, I embrace and respect my uniqueness. Yes, it is strange and weird that I cannot physically and emotionally allow myself to repetitively sense a trigger, and not flee, stop, or mute the trigger in some way. Additionally, once I’m wound up from a trigger, I have to consciously calm and soothe myself back down to normal, before I can re-enter reality, and focus, without a charge of adrenaline rushing through me. It’s weird, and it is exhausting, but I have a neurological disorder, that pumps extreme floods of weird hormones, and sensations throughout my body, at the slightest noises and experiences. I live with it, I have no other choice. The sooner all sufferers and those around us, accept that we cannot control being triggered and accommodate it, one isolating aspect of the disorder is lifted, and it becomes a little bit easier to process.

There may not be a cure, and if there ever is, it is very far off. Some of us might be dealing with this, on our own, with internet knowledge, for the rest of our lives. I advocate, and write, for the future generations of Misophones. So that maybe we can gain faster recognition and prevent more blind suffering. Mental illnesses and strange learning and sensory disorders, in general, have risen in children by 16% in the last ten years, so humanity will have to pay more attention to the issue at some point. There are many theories in which people believe that the boom in technological advances within the last 50 years, happened faster than the human mind was capable of widely handling, and this is having some backlash. The younger generations now know how to work a cell phone or tv at one and two years old, yet ask your grandma to work them, and see how that goes. This is terrifying, in a way. Regardless, that is only a theory, as to why the learning and sensory disorders are rising, but it is a proven fact that there is an issue, whether it is chemicals we are consuming or using, or what.

Don’t struggle scared and alone, or be uncomfortable.

It has slowly been coming to light, every single day, that there are a lot more Misophones out there than we all realized. We are not alone. We are all different. We are triggered by different things, and affected in different ways, and we all seem to have very sad stories. I’m tired of hearing sad things about Misophonia. Yes, we have a disorder, but we still deserve to be happy in life. We shouldn’t be embarrassed to ask to put on music, or turn on a fan, or get up and take a breather or stretch when we are stressed, and we shouldn’t feel ashamed when we have to wear earplugs, or headphones, whenever, or wherever. Instead of hiding the reasoning and being passive, use the only weapon we can use over the anxiety, include others, and cope as best as we can. If people ask questions about why we are different, or particular, use it as an opportunity to advocate, explain that you have a neurological condition and how it affects you! No human is perfect, everyone has some sort of battle they face. You have no idea who around you may be struggling too, and being open may create a lot of healthy dialogue. We are not hurting anyone but ourselves by bottling up and feeling ashamed of our biggest hurdle in life, no matter how huge we think it is or how hard we think it will be.

We can still be comfortable and happy; We are still human.

Congratulations Sharon, and anyone else that has completed school with Misophonia, or any other learning disorder, or disability of any kind. Graduate school is very impressive, but even High school is a pretty big feat. You are amazing, and should be very proud, for what you had to overcome to get to that point. Give yourself some credit.

My reply to Sharon…

She wore her earplugs, during her ceremony, and took them out before going up and receiving her associates degree. People probably noticed, but who cares? She was a lot better off, than if she hadn’t worn them. There is no need for a suffer to subject selves to a surefire panic attack, if it can be prevented. For my high school graduation, I wore earplugs. I kept popping the one furthest away from everything, in and out, to hear things around me, when needed, and hid it in my gown to grab my diploma. Sometimes, with disorders, like Misophonia, you just have to do whatever it takes to stay content.

Sufferers: Don’t be afraid to take precautions, or be comfortable.

Written by Rachel Tew

June 12, 2016 0 comments

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Awareness

Confessions of a Misophone

by Sensory Diversity June 10, 2016

written by Sensory Diversity

I experience audial, visual and tactile triggers.

I must confess, at first, my audial triggers were more prevalent, because I can close my eyes and avoid touching certain things, but I can’t always avoid a sound. Both visual and tactile triggers, usually are coupled with, and therefor, overshadowed by, an audial trigger. With visuals, I physically put up my hand, or some sort of prop, or close both, or even just the one eye receiving the triggering stimuli. I know that this can look very strange to others around me, but I cannot handle it passing through my sensory receptors. When triggered, in unfamiliar situations, around other people, I will either leave, or plug my ears, put in headphones or earplugs. When triggered in my comfort zone, or if I cannot block it out, I can sometimes get embarrassingly, angry, mostly at myself. I haven’t lashed out at others, since I was a kid. Now, instead, I get self destructive, and can, sometimes, exhibit immature, tantrum-like behaviors, such as growling or sighing aggressively, even stomping my feet, smacking, or banging or, the most shamefully relieving, slamming. This is on really bad days, but it does happens, embarrassingly so. I have to do something to let out all the tension, and adrenaline, swirling around in my body and mind.

Some things, that I can hear and see, when they are repetitive, pushes me to my limits. For example, when some one wipes their hands on their pants after every single bite of chips with some sort of powder or salt on them. A lot of people are incessant and do it every single mouthful, like they aren’t about to stick their greasy fingers back in the bag, to grab some more things, put their hand up to their mouth, and then crunch and chew on some more, and take twenty minutes to finish the bag. I cannot stand hearing, and shy away from touching, cardboard, paper, Styrofoam, velvet, fabric, jeans, carpet, the ever dreaded four cup drink carriers from fast food restaurants. I will avoid experiencing any combination of these things rubbing up against each other, at all costs. I carry lotion everywhere, because the sound, and feeling of dry skin rubbing up against dry skin, or practically anything else, especially anything listed above, sends shivers up my spine.

I instinctually pay extra close attention to my surroundings, and actively avoid experiencing triggers. This causes anxiety, and sometimes involves me seeming a tad preoccupied and acting oddly. When I am triggered in a situation, I have to evaluate whether or not I want to, or have to stay, if the answer is no to either, I’m gone. If the answer is yes, then I try to cover it up, with my own voice, tapping, or with background noise, if I can. I block my view, act very exaggeratedly, and energetically, and usually express the shock and detest, however, blaming the cause on something else. If none of that works, and I just can’t escape, I plug my ears, shut my eyes, practice my deepest breathing, to where I’m the only thing I can hear in my head, and try to find muster up the strength to still feel human afterwards. Even though, I am very aware that I can look ridiculous, I cannot change this about myself. It is not me. It is the disorder that I am stuck with, my life lesson, and my battle. I am strong and will not let it defeat me, but it is still a daily issue.

I sincerely apologize for my chronic resting b**** face.

June 10, 2016 0 comments

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Coping

It’s Ok to Not be Ok Sometimes

by Sensory Diversity June 10, 2016

written by Sensory Diversity

Tonight, on Thursday June 9, 2016, my boyfriend and I went to a going away party for one of our friends. He (our friend) had just gotten a job in Alaska and was moving there very soon to start his new job. I was excited to go because it was unlikely that I’d see this friend again after tonight.

However, once we got to the party, I immediately heard this one guy speak and trigger me with a sharp “s” sound. And every time he spoke, the sharpness of the “s” sent me over the edge. I was filled with rage and I wanted to slap him and yell at him to shut up. The party was held in the friend’s house, which was pretty small, and we were all by the TV. There was no way I could get to another part of the house to escape this guy.

I called my dad to bring my over the ear headphones, as I had left them at home because I didn’t think I would get triggered. When I got my headphones, I immediately put them on and started playing brown noise, but I could still hear Sharp S Sound guy. I turned up the volume as loud as possible, to the point where I couldn’t hear anyone. I couldn’t hold a conversation now, which was annoying because my poor boyfriend could only type things to me on his phone.

An hour went by, and my head and ears began to hurt. People were laughing, talking, just generally having a good time, and here I was, staring at my phone next to my boyfriend unable to talk. I decided to go to the restroom while everyone gathered around to play a game on the TV. I sat on the floor, annoyed, and contemplated on what to do as I played a game.

An hour went by, and I decided to call my aunt for a ride home and let my boyfriend have fun.

I was defeated. I wanted to have a good time, but because Sharp S Sound guy talked that way, I couldn’t.

When I got home, I realized that sometimes I can’t always stay in a place where there are triggers. Sometimes a trigger can get so bad that you HAVE to leave. You HAVE to, or else you’ll eventually snap. In my situation tonight for example, if I had stayed at the party, I would have had my headphones on all night, frequently going to the bathroom for a break to take off my headphones, and I wouldn’t talk to anyone, which would make me look like I wasn’t having a good time. I always try not to let my misophonia get in the way of me having fun, but sometimes it wins. And you know what? It’s okay. It’s a chance to go home, destress, have some time for yourself, and then go back out the next day and try again. Never give up trying to fight misophonia, because not fighting will only result in isolation.

June 10, 2016 0 comments

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Coping

Long Car Rides and Misophonia Simply Don’t Mix

by Sensory Diversity June 7, 2016

written by Sensory Diversity

If you’ve ever been on a long field trip, whether it’s to visit family or go on vacation (or a combination of both), and you were stuck in the car with all kinds of triggers, you know what I’m talking about. It’s probably the worst thing to anticipate and go through, especially if you HAVE to go on the trip because your family is saying “You have to go. This is why it is always important to have insurances like One Sure Insurance covering your cars, you never know when you will need to make an unexpected trip, Get the facts here”

Don’t get me wrong, I love my family and I love spending time with them, it’s just most of my family basically live on the other side of the world. And since I don’t see them often, when a trip is planned, I have to go and I get extremely anxious.

I’ve learned to prepare like crazy when trips like these spring up out of the blue. I prepare two ways. The first way is mentally. I have to acknowledge my anxiousness about the trip, and then let myself know that I’ll be ok. That doesn’t get rid of my anxiousness, but it brings it down a lot, which helps me think more clearly. The second way I prepare is by bringing my over the ear headphones to plug into my phone and listen to music in the car. If not music, then I listen to brown noise on an app.

Second, I bring things to read in the car, and that can range from 300 page novels to a single comic book. If the ride is long, I make sure to bring a couple books and a few comic books (if you’re interested, I love to read Spider-Gwen and Girl Thor ?).

This year, I’m visiting my aunt, uncle, cousin and his wife and children in New Mexico. I live in California. You can guess how long of a car ride that’s gonna be. LONG. So I must be prepared in order to survive (sounds like I’m preparing for a zombie apocalypse or something!). Thankfully, my relative that’ll drive me up there knows I have misophonia. She likes to play music in the car if the ride is long, so I can understand that. However, if the music starts to trigger me, I can ask her to either turn it off, turn it down, or just put on my headphones and listen to brown noise. This is just what I do when I’m stuck in a car for a long time with no way to escape, and I hope it helps you.

I’m so thankful I have my relative’s support, because I know many of you don’t have support from your family, and I think that’s terrible. When I first started experiencing misophonia, my parents didn’t support me either. I went online and showed them evidence that what I was experiencing was real and valid. That’s when they started to be more supportive. If you’ve already tried this and your family still isn’t supportive, just know that you are valuable and neither your family nor misophonia should make you feel any less. I encourage you to keep trying if it’s safe to do so (by “safe”, I mean if your mom or dad or other relative don’t start yelling at you and start triggering you on purpose when you bring up misophonia, then you should persist in trying to help them see that misophonia is real, and that their support is vital).

Thanks for reading!

June 7, 2016 0 comments

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