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ArtAwareness

Book Review: Sound by Kelly Bruno

by Sensory Diversity June 7, 2016
written by Sensory Diversity

sound misophoniaWhen I first read Sound I was astonished by its striking honesty. The story of a young girl, Jessica, was able to permeate through layers of my emotion and eventually settle upon my heart. I’m not saying this lightly. At many points I had to pause to shed a tear. As a writer it’s not often a book makes me stop (aside from my own, when I’m lost in the throes of editing) and question my own life, and feelings. I see a great number of similarities with this book and Patricia McCormick’s Cut. Where Patricia’s character refuses to speak, essentially sound-less, Kelly’s character, Jessica, is tortured by sounds.

As I am a slave to honest writing I am compelled to explain to you both the strengths of Sound and its weaknesses. This raises a problem for me. How am I supposed to mention weaknesses in a work that seems to be the first of its kind? With no comparison, and nothing else tied to my heart in the same way, I feel my criticisms would merely fall flat. However, if I am truly honest, there are times when Jessica seems to be the concept of a teenage girl, and not just a girl herself. I wonder though, if this “stock character” is merely a trope. Perhaps what one may see weakness — a fairly incomplex character — a sufferer searching for “some one like them” may feel at ease with the seamless consciousness. Another small point I will mention is that sometimes Jessica feels too sheltered from the world. Where she texts freely, seems to have a good working-knowledge of many things, she becomes confused by the term “ICU”. An otherwise unsheltered character seems to know little of this place, and I wonder if this is merely an oversight or shows a deeper meaning. Perhaps it is to contrast that Jessica thinks her Misophonia is the worst thing she has seen, but in other ways she is innocent against the world, and its tragedies.

Sound moves forward freely. There is no moment where you feel the book is dishonest in its accounts of an unknown disorder. As a sufferer of this disorder I feel a great appreciation and empathy for the character. However, its comparisons to Cut are strongest in what I believe to be the books ability to show Misophonia as more than chewing rage, or a rage-based disorder. Jessica’s struggle is human. Any reader, especially young adults, would pick up this book and be thrown into the world, and the pain of Misophonia sufferers. At times the book becomes uncomfortable — as Jessica feels the strained relationships with friends and family. It is these uncomfortable moments that show Sound for what it is, a truly remarkable story of self-discovery when there is little information to discover.

377793_10200145210815522_6571368_nAuthor Kelly Bruno is a Special Education Paraprofessional that has shown empathy for persons with disorders through her career and home life. In Kelly’s family, there are a plethora of sensory issues. Sound is Kelly’s way of shedding light on Misophonia.

 15-year-old Jessica believes that she is going crazy. Small, everyday sounds, like the sound of her brother chewing his food, or of a classmate clicking his pen, have suddenly begun to trigger within her an instant feeling of rage. She is afraid to tell her friends, her parents, or anyone, including the long list of doctors that her mother drags her along to, what is going on inside of her head. She is afraid that if she does, that they too, will then believe that she is, in fact, going crazy. Sound is a year long journey, from doctor to doctor, and of self discovery. View Full Product Info Here

June 7, 2016 0 comments
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Coping

College Misophonia Sufferers

by Sensory Diversity June 7, 2016
written by Sensory Diversity

College misophonia sufferers face troubles that many students have never imagined.

I’m a college sophomore, soon to graduate from my community college (yay!) And from my time there–2 years–I have had to deal with countless triggers from other classmates and from the professors themselves.

Let me tell you, it’s HARD to concentrate on a lecture when your own professor triggers you. All I hear is the trigger noise and the screaming voice in my head telling me to “just leave and forget school and go live in the mountains with your boyfriend where it’s nice and quiet and no one can trigger you”.

But alas, reality kicks in sooner or later.

For the past two years, I’ve been wearing earplugs to school and bringing a pair of over the ear headphones along to put on during lectures. The headphones ruin my cute outfit, but I gotta do what I gotta do.

This year, I had the brilliant idea to pick five 3-hour classes (four of them are once a week, hence why they’re longer. I took an American Sign Language class that was twice a week and the class was about three hours) and one regular class (twice a week, usually an hour and 30 minutes). So I have had to wear my headphones for most of those classes, and man did my ears and head hurt from wearing the headphones for such a long time. But, it was either wear the headphones or never step foot in class again. No pain no gain, right? ?

When I wore the headphones, I didn’t play any music or white/brown noise because I wouldn’t be able to hear my professor. I tried it in one of my classes and I was lost the entire time. I go to college to learn, not to get lost in my comfortable world of music and brown noise. My aunt always tells me to “get out of my comfort zone”, so I suppose I’m doing that on a daily basis already by not letting my misophonia control me so much at school, even if she doesn’t think I am.

Sometimes, when I’m having a really bad misophonia day, headphones don’t work either…I can hear a trigger noise through my headphones and I feel like I’m going insane. I mimic the sound and sit there trying to retain what my professor is saying, but I never can, so I have to go through my book and skim the chapter we covered.

I don’t have a huge problem with classmates being triggers. There’s the occasional foot tapper, the one that eats during class, the two people whispering to each other during class, and the one weird person slurping water from his HAND (yep, that happened once!), but my headphones drown most of that stuff out. It’s the professor that’s usually the main problem. I can still hear my classmates, but not as much as I would if my headphones were off or if I wasn’t wearing earplugs.

I fear one day I’ll say to myself “I’ve had enough” and just quit school and get a job somewhere that only requires a high school diploma and an Associate’s Degree (which I’ll be getting soon!). But I know my family would be disappointed, and my boyfriend would worry about our future together, so that keeps me from being dumb. For now, anyway.

In the end, the way I cope isn’t the best, but it’s all I can do. I’ve tried going to an audiologist for assistance (hearing filters), but that didn’t go as planned because they never got back to me. I rely on earplugs 24/7 and headphones for situations where if I leave due to a trigger, I’ll feel rude/miss out on something. I know putting in earplugs for long amounts of time can’t be at all healthy, but what else can I do? Would I be willing to try going without earplugs? Only if there was a better alternative. Like the equivalent of earplugs, but they work like earphones and filter out all the offending noises. ? I hope this was a good read, thanks for reading!

June 7, 2016 0 comments
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AdvocacyAwareness

I Have Misophonia… Hear My Voice

by Sensory Diversity June 6, 2016
written by Sensory Diversity

 

Volunteering can be very rewarding; you can meet some wonderful people while contributing to the community.

Being a mom, I have always taken great pleasure in volunteering at my children’s schools. As much as I enjoyed volunteering I realized that working with all of the triggers was causing me severe anxiety. After many years I found that I preferred volunteering behind the scenes versus at the actual event. I thrived on being able to organize an event but dreaded attending them. Additionally, having served on several parent club boards, I found the meetings almost unbearable. For the last three years I was the chairperson of one of the largest events at the school; however, my Misophonia started to get worse, my anxiety grew and I had to step down. Sadly, the timing could not have been worse and I know that I definitely burned some bridges.

This was the point at which I realized that I had spent the last seventeen years doing for everyone else; now it was time to do something for myself. To the outside world it appeared as if I was being selfish; however, I was really just trying to keep myself together. Anxiety + Misophonia can lead to severe emotional breakdowns in high pressured situations. The decision to walk away was a struggle and at the time I was still keeping my ‘dirty little secret’ of being Misophonic. Things had to change, and in order to do that I knew I needed to come out about my Misophonia. How am I supposed to do that? People will think I am making it up. Others may expect me to “control it,” and of course there will also be the know-it-all that simply thinks you can use Google to find a cure. The fact of the matter is, we need to change this perception. People WILL make fun of it. I mean, OCD is widely known and people take that lightly and make fun of it; just imagine how they will express their ignorance about Misophonia. WHO CARES? I am still me, the same person that I always was, but maybe they will understand why I am not always the peppiest person in the world. Then again, maybe they will not understand, but the bottom line is they can choose to accept me for who I am or walk away. Anyone willing to walk away does not deserve my friendship.

As I began to search for a medical provider, I was facing the biggest challenge of all… to find a medical professional familiar with Misophonia. In the United States it was nearly impossible; I finally found a provider and she accepted one specific type of health insurance or $3,000 cash just for an initial consultation. As a benefits specialist I know some tricks to get services covered so I called my business connections. Wait, I have an advantage and I am still struggling; I cannot imagine what other people are facing.

I continued to make phone calls, and I made a decision that I really wanted to use my volunteering efforts to help raise awareness to Misophonia. But where do I begin? I cannot even find a doctor who has heard of Misophonia.

So my journey began. I started to share my stories, I joined several Misophonia support groups. One in particular seemed to stand out… Misophonia International. Volunteering with Misophonia International has become my calling. I am helping to raise awareness of Misophonia, meeting wonderful people who completely relate to how I am feeling and share the same passion. We work together for a common goal, we share our stories, we vent, and we share our ideas. I do not have to attend annoying meetings with gum chewers, pen clickers, and nail tappers. Most of the volunteer work that I am doing is from the comfort of my own home on my computer at a time that is convenient for me.

Maybe you think you do not have anything to contribute? That is not true, sharing your story can help us raise awareness. Are you afraid? Of what? Do you want to continue to struggle with your Misophonia? A cure or treatment will not find itself. Don’t sit around waiting for someone else, stand up… be an advocate for yourself! You are worth it! You have heard my voice… let’s hear yours. #Misophonia

If you would like to volunteer you can contact us here.

June 6, 2016 0 comments
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Relationships

Married to Misophonia: For Better or Worse

by Sensory Diversity June 3, 2016
written by Sensory Diversity

For Better or Worse…Living with Misophonia is not easy on anyone

I realize that it is not easy to live with someone with Misophonia. For the most part, my husband has been very supportive and I do see him making a sincere effort not to trigger me. He is very soft spoken and reasonable and typically he will express his anger in silence. Tonight tells a different story.
I am sitting on the sofa relaxing and coloring, my husband storms out of the bathroom and barks “WHO PLUGGED UP THE TOILET AND DIDN’T TELL ANYONE?” I immediately jumped and felt every muscle in my body tense up. Oh no, he needs to calm down, trigger mode enabled. He continued to ask in a very agitated voice.

Sure, I completely understood his frustration, we have told the kids dozens of times if there is an issue all they need to do is let us know. He saw my body tense up and in a very angry voice, he told me, “You know, you really need to get your triggers under control.” WHAT?! Get them under control? Are you serious? Do you hear what an ass you sound like? I sat in silence, trying to take deep breaths and calm down, I focused on the Mandela I was coloring. Think I will use glitter blue next. Breathe… breathe… deep breath. Damn, this is not working. I avoid looking at my daughter. I sense that she is very upset, obviously she is the one who plugged the toilet and didn’t confess, so she starts to cry. What an asshole! She was obviously embarrassed, she messed up, just let it go, it is not a big deal, what the hell is your problem? Now my heart is breaking for her and I cannot comfort her because her crying will just add to my response. I know that makes me sound like a bad mother, but I know that it is best right now for me to just step away knowing that I will explode, no matter how much I try to refrain.

A little while later he asks me, “What are we going to do about this?” Oh this is going to be a very interesting conversation. Is he kidding me? I want to punch him in the face! “What would you like me to do, you know I have no control over this? Do you really think I enjoy this? Well I don’t! I really cannot talk about this right now.” Really? He tells me he understands, now this? We sit in silence. I wish he would just go away. His eyes are penetrating me, he looks at me with concern and confusion.

hands-woman-girl-silver

Once I have had ample time to calm down, he asks if we can talk. Sigh, ok let’s just get this over with already. Naturally, I am on the defense and start the conversation with, “I cannot believe you actually think I can control this?” He held up his hand to silence me and asks, “What do you need me to do? You told me that you would give me some kind of sign when you are being triggered but all you do is (he makes a motion to simulate the way I tense up) you did not even give me any warning.” I explained that loud sounds, especially sudden loud sounds set me off, sometimes the triggers can build, other times they are very sudden like a gunshot, which obviously I have no warning myself. He is listening to me, and trying to understand this. How can I explain it when my reactions are not black and white? It is not like my brain processes the sounds and sets off some type of warning alarm- HEY! Vicki! The next sound you hear is going to send you into the immediate rage. I suppose it would be nice if it did, so I could brace myself. Sorry honey but Misophonia does not work that way.

He tells me that he has been doing research on Misophonia and many of the articles that he has read tell him that he should try to help the Misphonic person avoid stress. This is the reason that he has been helping around the house, picking up after himself, doing the dishes, cleaning the table and putting things away. Well I do not see how that would affect my Misophonia but I am keeping quiet about this and taking advantage of the extra help. Shhh- don’t tell him I said that. He assures me that he loves me and that I am not alone in this battle, he is here for me to support me in whatever I need.

In hindsight, my husband is not an asshole, (that was just my miso talking) this is just an un-expected part of the journey, but at least I know that we will make this journey together. For better or worse!

June 3, 2016 0 comments
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Awareness

Misophonia: The Shock of Cold Water

by Sensory Diversity June 3, 2016
written by Sensory Diversity

Telling the Boss about your Misophonia … it Sounds Crazy

For many years I have worked from home. It’s been very stressful to work in an office. The noise… the terrible sounds of yelling… the clicking of shoes across the floor, conversations, staplers, papers shuffling… the list goes on and on.

As I sat in front of the owner of the company, a woman I worked with for 28 years, tears filled my eyes. She was no longer accepting the fact that the office ‘stresses me out’.

“I have a neurological condition called Misophonia”.

There it goes… I said it…. Out loud. Whew! She stares at me with “that look”, the look that says she thinks that I am completely insane.

“It is not all in my head! I am not crazy”. I blurt out as I begin to sob uncontrollably. I hand over a detailed letter requesting work accommodations which also explains Misophonia. I had hoped I could keep this information to myself; I really did not want anyone to know. This is the dirty little secret I have kept hidden. Why? Until recently, I did not know it had a name, I honestly thought I was just a mean and hateful person.

I feel a wave of relief wash over me, as she sits in front of me reading the letter. It is out in the open, I do not have to hide this anymore.  Wait a minute… Does she think I am crazy? What is she thinking? A look of understanding begins to appear on her face, things are making sense to her…. why I will not eat in the lunchroom, why I do not attend company parties and functions, and why I try my hardest to avoid my co-workers. I explain to her that Misophonia is something I have had my whole life and it has gotten worse and worse over the years, there is no cure, and there are only coping mechanisms.

With a skeptical curiosity she asks me questions, “Have you tried to ignore the noises?”, “Have you tried to block them out?”

My heart drops… she thinks I am making this up? Does she really think I can control this? No, I enjoy this pain, I love the anxiety of being triggered to the point where I am wishing people dead. This is fun for me. This is not a condition that I chose, there is no cure, and there is no ‘magic pill’ to make things all better. Then…. The loaded question, “Why didn’t you tell me about this before?”

This is a simple one to answer, “I never told you about it because you would look at me like I was crazy, THE WAY YOU JUST DID.” She explained that she doesn’t think I am crazy she has just never heard about this condition. Is she saying this just to appease the crazy person?

google misophonia

“So what are you going to do about it?” she asks. This is my favorite part of our conversation, she starts to explain that all we need to do is “google it” and we can find help. The laughter inside my head is deafening. Really? That is all I need to do? Well. Let me get on that right away, I did not realize there was such a simple solution. Why didn’t I think about this? Wow she is just not ‘getting it’.

To help her gain a better understanding of how Misophonia works, I asked her to think about what it is like to jump into a swimming pool, the cold water is shocking but after a few minutes, the water is not so cold, it’s actually quite comfortable, even warm. Now let’s think about the water and pretend the water is sound, when a person with Misophonia is subjected to a trigger sound, we are hit with the shock, but unlike the pool water that gets warmer with exposure, the sound triggers make the water colder… and COLDER and COLDER until it is so cold you cannot stand it.  Sometimes, depending on the trigger and circumstances our reactions can either be a slow build up- other times it can be an instant explosion. As we are in our ‘trigger mode’ we can pick up other triggers, things that have never bothered us previously. Like cells multiplying and we cannot stop them.

SwimmingPool misophonia
It is very challenging to explain Misophonia to someone, but it is something that we do need to do to help raise awareness. Some people may be very empathetic in their reaction, others may feel that this is a ‘made up’ condition, and there will also be those who will choose the path of ignorance. You need to remember that is not a negative judgment on you and does not diminish the severity of this disorder. You are still you and that is all that matters

June 3, 2016 0 comments
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Coping

Consistently Uncomfortable

by Sensory Diversity June 1, 2016
written by Sensory Diversity

 

In 5th grade, right around the time I hit puberty, I started to notice that I was very sensitive. I would get immediately distracted and violently aggravated, by the sound of certain, usually repetitive, ambient and bodily noises. I cannot sleep or concentrate if I hear a ticking clock, and I have been known to remove them off of walls. Chewing, repetitive coughing, slurping, and other various bodily sounds all bother me, but the “trigger” with the most impact out of all, is sniffing. This is due to the amount of times this particular trigger can be heard throughout a normal day, and I cannot help but notice every single sniff that occurs within earshot of me. Not only do I notice it, but it causes an extreme flood of fear and anxiety to rush through every facet of my body.  This natural, innocent noise being such a disruptive thing for me, is extremely tiresome. Most of my family members have sinus issues, causing them to sniff quite frequently, all year round, 24/7, and fun fact: so does most of the rest of the world, including a lot of you reading this. All of these things that trigger me, make it difficult for me to function properly for most of the day, anytime that I am around other people, or even listening to, or watching them. In my younger years, I was violent, physically aggressive, and verbally abusive when triggered repetitively. Since then, through humiliation, and confusion, I have figured out other ways of coping that don’t hurt the people around me, or I remove myself completely. However, it still greatly affects me, internally, and hinders my social interactions. I cannot comfortably be in the vicinity of other people making these natural noises. Even if I am completely comfortable and enjoying myself in an environment, the second I experience a trigger, I am disgusted, in a bad mood, and I want to leave right away. I cannot keep myself from noticing it, and reacting to it, when I hear it. Thus, keeping me from fully focusing or functioning for a stunting majority of the day. I have problems concentrating, remembering details and making decisions, when my mind is under attack. Most people don’t even notice any of my triggers, because it is suppose to be background information, but for some reason, part of my brain didn’t get that memo, to my detriment.

Generalized-Anxiety-Disorder

What exactly do I experience when I am triggered?

  • Panic/Anxiety
  • Fear
  • Throat tightening
  • Strong desire to stop the source of the trigger
  • Emotional distress
  • Sweating
  • Quickened heartbeat
  • Extreme muscle tension
  • Fidgeting
  • The urge to flee.
  • The reflex to repeat and mimic the sound to “cover it up” in my head.

These are all reactions that I have as soon as I experience a trigger, without my consent. Since I have such an uncontrollable, violent reaction, my body and mind get stressed out. I’m left physically tired, mentally exhausted, emotionally confused, self conscious, and terrified that I made a fool of myself in the process. I know people around me sense my sudden anxiety. I am aware that, in person, I can act very strangely. I know that I say weird, or strange things, act flighty, goofy, or seem like I am not paying attention to anything. I know that I twirl my hair constantly, fidget, move, pace, position myself in weird ways, and/or move away from people without explanation. I know that when people are upset, and their noses are running, I seem to get angry, even though sometimes they really need me to be calm and comforting. I know that I come up with peculiar excuses for behaving in such strange ways. That is not my true personality, and I am ashamed, and feel extremely guilty, that I act this way. These behaviors are only mechanisms I have acquired due to my daily battle with Misophonia. I can’t fully focus on anything or “act normal” when my nervous system is being violently disrupted at the slightest, most common noise. It’s just a simple noise, with no malicious intent, no threat to my well being. I know this, you know this. However, no one else around me really seems to understand what this actually does to my mind and body. An extremely negative psychological response occurs for me, including depression, anxiety, and agoraphobia.

I have the urge to stay inside, in my room, sometimes for days, even weeks, straight. I dread going anywhere: to the movies, out to eat, out shopping, to school, to work, even hanging out with family and friends, because it is much easier and less stressful to stay home, than to put myself in a position to be triggered and have another anxiety attack. Staying inside all day, not feeling like I can explain myself, missing out on enjoying my life and not being able to do things without fear, anxiety and distraction is deeply depressing. I have contemplated my mortality far more extensively than a 22 year old should, as I have had ample amount of to do so, while in hiding from the world. I don’t have suicidal thoughts, or want to die, but for a while, my life did seem meaningless and cruel. I was underweight for almost two years and still currently struggle keeping a healthy weight. I feel like, for years, I have faked that I was normal as best as I could so that people wouldn’t ask questions. I struggle with faith because I find it hard to believe that someone or something could have purposefully created me to suffer. I strive to be a good person, with respect and morals, but that is because I believe it is my duty to be a decent human, I am just not sure who I really answer to. Constantly being in a physical and mental state of stress has its consequences. I’ve been doing my research, and correlating with personal experience. Under stress, muscles tense up, and mine don’t hardly get the chance to relax. Tight muscles cause headaches, back and neck pain, and body aches, all of which I experience quite frequently, and move very stiffly because of so. It, hurts, so it discourages me from exercising, however, strengthening the muscles can lessen the pain. Stress decreases my appetite, causing me to struggle to keep body mass index out of the “underweight” category, and subsequently resulting in my weight being the topic of conversation when I see loved ones. Being stressed raises my heart rate, and chronic stress causes my heart to over work in the long run, making me more susceptible to heart and other related conditions, later on in life. Chronic stress does lower the immune system, although I don’t feel like I get sick super often, its still a threat to me. The rush of hormones, rapid breathing, and raised heart rate, disrupt the digestive system, causing me to have acid re flux, heart burn, and even digestive issues. Not only does the stress have negative effects, but the coping mechanisms that I have developed are somewhat destructive. I tense my muscles, twirl my hair, pick my nails, and grind and grit my teeth as a stress and anger release.

Here is where things get shamefully strange. I like to sit in the back of rooms, wherever my back is to the wall, or there is little to no people behind me, because I find it easier to manage when I can see where the noise is coming from. I like to have my hair down, so that I can put earplugs in my ears more discretely, and, also, because even when I don’t have earplugs in, my hair sort of acts like a safety blanket over my ears, making the noises a little more tolerable, its more of a mental comfort thing. I also know to avoid or prepare for certain places, times, and people that I know will cause me to hear a sniff. There are a lot of little ways that I have found to cope, even if its just in my head. Most people sniff quite a few times a day, sometimes just for emphasis. People sniff when they go swimming, and usually after they cough or sneeze, which are also triggers for me, subsequently. On top of all of that, I live in Tennessee, which has one of the largest variety of trees in one location, resulting in allergy season, and generally all year round, to be extremely exciting. There are lots of different types of sniffs, and some of them bother me more than others. It depends on the volume, length, pitch, and tone of the sniff, itself. This is where things start to sound a bit nuts, because I sort of have a science behind it. (It makes me feel better) I can tell how a persons sniff is going to sound by the shape of their nose and know to avoid sticking around people who look suspicious of being extremely bothersome. I think the aspect about sniffing, that causes the most emotional impact, though, is that people sniff when they cry. The tear duct is connected to the sinus passageways. The major problem is, people cry when they are hurting, or sad, and that’s usually when they need me to be there the most physically and mentally. However, all I want to do is be very, very far away. I’ve been known to my family as being robotic, insensitive, or I have been compared to Sheldon from The Big Bang Theory, because of the way I act when people are upset, or are just sniffling. Which doesn’t reflect my actual personality at all. I really do want to be able to be there, and I do get through it, assisted by adrenaline, for emergencies or serious events, but other than that, I have zero tolerance for crying. That does not mean that I’m not sympathetic or not caring, though. I will address problems that cause the pain, but most likely from a distance. Even if I really want to, sometimes, I just can’t stick around to provide physical comfort, to those I love. This negatively affects all of my relationships with everyone, if I can’t be there on that level, it stunts relationship growth, and causes us to be less affectionate, and more detached overall. This is why the family, and the only friends I have, I barely see, because I am afraid of them sniffing… and also, because I feel guilty. Hypocritically, I have cried, and sniffed, countless times, myself, which only added to my guilt.

Even though the majority of this article has been depressing, I don’t want people to think that I have given up hope. I am not going to be held back by my own brain. My solution is to carry earplugs and headphones wherever I go, and play music or background noise whenever I can. I force myself to continue living my life, even if it means being triggered in the process, when I accomplish my goals, I will appreciate how hard I fought and worked at it. I am stronger than my disorder.

By Rachel Tew

June 1, 2016 0 comments
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Coping

Misophonia at Graduation: Is The Grass Greener Without Sound?

by Sensory Diversity May 21, 2016
written by Sensory Diversity

Does the grass sound greener on the other side?     

My son is my world… I have watched him grow into a wonderful young man. Graduation day came all too soon. As it started to approach the fear and anticipation started to build up about the graduation ceremony. The triggers- clapping, whistling, gum chewers- I knew they would all be there. Easily a few thousand people. I was dreading this event and I really did not want to go.  I put on a brave face and went for my son. I would deal with the triggers- I had to- this was my baby – I will do anything for him.

We have all wished to be something else…. to be smarter, richer, more successful. At one point or another we have all envied someone.  The grass is always greener on the other side, right? As I sat on the football field, waiting for the ceremony to begin- I observed people around me.  Of course I had the loud cell phone talker behind me (I wanted to smack that phone out of her hand), the hard candy cruncher next to me, a gum chewer in front of me who also proceeded to play with his gum through his lips, as if he could not blow bubbles. Putz!  I really wanted to smash that gum in his face! Then as I glanced to my right – there sat a woman with her back to the field facing the guests, she was signing to a parent. I watched in awe, I was jealous… I wanted to be that deaf woman.  I thought to myself  “how wonderful for this woman to not to feel the rage and hatred from hearing the sounds… sounds that you cannot avoid… sounds that in reality are just normal, but to someone with Misophonia, they are the ultimate torture.”  She is able to enjoy this ceremony without fantasizing about punching someone in the face because they are smacking their gum, she is not hearing the high pitched sounds from the echo of the PA system.  I wanted to be her, just to experience normality of being able to go wherever I want and not worry that someone will tap their nails on a table. This was not the first time I have wished for total loss of hearing. I have gone so far as to look into ways to damage my hearing. Life would be so much better for me without sound. I have not found any coping mechanism that can help me. Deafness seemed like the perfect solution. For a moment I wanted to be deaf.

Then I thought about it. I am just as sure that maybe she was watching others wishing she could hear the sounds around her… the music… maybe her child was in the band?  The disappointment of not hearing your child perform may be her reality. She will miss the sound of her child’s name being called out as a graduate.  She will miss the touching speech given by a student as she recollected her 4 years of high school.  She could not hear the cracking in her voice as her emotions spilled out  — the crackling that made tears roll down my face.  Most importantly she will have missed the tiny little voice calling out “mommy”. Now I have to ask myself is the grass greener?

Misophonia is still in the early research phase. Misophonia suffers can hear everything. Maybe it’s time to get someone to HEAR us?

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May 21, 2016 0 comments
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Awareness

To Those Who Don’t Have Misophonia: Please Support Us

by Sensory Diversity May 21, 2016
written by Sensory Diversity

I am writing this open-letter on behalf of those that suffer from Misophonia. Family, friends, colleagues, you may have seen “memes” that have been shared explaining Misophonia as “annoyance” or “over-reacting”. This is hurtful to us. Misophonia sounds like a silly name, I agree. However, the condition itself is not silly.

Misophonia sufferers face a severe aversive reaction to sounds (and often sights/tactiles/other sensory stimuli). We need your support.

This reaction is like that of a bullet. You go from fine to completely distraught in seconds.

You cannot just “get over it”, “think it away” or “seek help”. Why? Because it is most-likely in the part of the brain called the amygdala there is not enough research yet to define the disorder let alone a cure. With this knowledge it can be a tough disorder to live with. A partner’s chewing, breathing, snoring, or pen clicking can lead to a minor meltdown.

We do not want to be angry. We do not want to be depressed. However, we are often trapped in our isolation. Our disorder preys upon our mental health. We do not want to snap at you. We are sorry that we’re irritated. However, we cannot control our feelings. Yes, we can try to communicate our disorder but we cannot stop the reaction we face when we are faced with a trigger.

We, as sufferers, ask for the same understanding and compassion you may show to a person with autism, Asperger’s, epilepsy, or any condition that changes quality of life. We are not lying or making this up. We are not trying to control you. We are not “sensitive” to sights or sounds. It is as though we are being trapped and then attacked. To us, and our brains, we cannot differentiate what is threat and what is “background noise”. To us, it is all a gun shot. Then, we are left to cover our bleeding and hemorrhaging wounds with ear plugs.

We know that you cannot cure our disorder. We know that you cannot help making noises sometimes. But we do not understand when you belittle us for it – or do not try. While we learn coping skills and await research, we are looking to you to hold our hands. We need your love now more than ever. This disorder may be based in “anger” but that doesn’t mean that love can’t win.

Please show us support and consideration. Don’t share memes that mock our disorder. Don’t tell us we are lying. Don’t tell us we are crazy. Have a conversation. Be empathetic. Together we can take away the rage and live together.

Sincerely,

A Misophonia Sufferer

May 21, 2016 0 comments
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Coping

Misophonia and Your Anger

by Sensory Diversity May 19, 2016
written by Sensory Diversity

Psychologist T.W. Smith explains anger as “an unpleasant emotion ranging in intensity from irritation or annoyance to fury or rage.” One of the most common reactions to being triggered is anger. Misophonia sufferers often spend a lot of time feeling angry – it’s just a part of life for the majority. This reaction may feel ridiculous, getting so angry over a small noise that a person is making unintentionally. For this reason, a lot of sufferers have issues with coping with their anger. It feels wrong to be mad at a noise. Hating someone for something that is seemingly trivial, such as the way they chew or breath, can feel unfair. Wishing bad things upon someone out of anger, because they make a trigger noise, can feel downright evil. The bright side of this issue is that there are many tried and true ways to cope with anger.

The most important thing to remember is that you have to control your anger before it controls you. This can feel impossible, especially when you’re in the middle of being triggered, but it is possible. First of all, understand why you’re angry. You have a neurological disorder, and it is not your fault. You’re not actively choosing to be angry, and that is very important to remember. You need to take action to help yourself, but you need to avoid blaming or shaming yourself.

Honestly, the key to coping with anger as a misophonia sufferer is taking responsibility but not shaming yourself. If you hate someone because they chew loudly, then you have to take responsibility for that. Don’t pretend that you don’t feel very angry towards them. But don’t shame yourself for it either. Feeling bad for yourself is not constructive. You have to work towards accepting and coping with the anger you feel while avoiding blaming yourself.

Misophonia sufferers often feel remorseful and guilty because they are shamed by other people, so don’t shame yourself.

Another way to avoid anger is to try to reason with yourself about how useless anger is. Denying anger doesn’t work. When you feel angry, accept it, but don’t hold on to it. Anger clouds your mind, hurts your health, and can hurt others. Once you understand that, it will be way easier to let go of any anger you feel when you are triggered.

All of that aside, it is important to note that, since you are a human, you will get angry sometime. No matter how Zen you are, or how logically you think when you’re not triggered, every once in a while you will get angry because of a trigger. When this happens, you can try any anger management technique that exists, as they exist for this very reason. Below are some of the best ways to cope with anger:

Distracting Yourself: This is a very common coping technique and easier said than done. It’s still worth trying, though. If you hear a trigger and start to get angry, don’t focus on it. Instead, distract yourself in any healthy way. Focusing on anger only intensifies it, so focus on something else. Think happy thoughts, work out a complex math problem in your head, have something to eat or drink, listen to music or read a book – do anything that lets you stop thinking about how angry you are and focuses your mind on more positive things.

Counting to 10: Thomas Jefferson famously said, “When angry, count to 10, before you speak; if very angry, 100.” While this may seem like a useless thing to do, it truly is effective when you’re angry. Slowly counting to any number distracts you, passes time, and gives your body a chance to calm down. For example, counting to 10 might be enough to get your heart rate down a bit, and that will do a lot of good for you, both physically and mentally, as you will begin to feel calmer and your arousal will decrease.

Breathing Exercises: While this could be lumped in with distracting yourself or counting to 10, it can be a separate and very effective way to cope with anger. When you’re angry, take a deep breath. It will slow down your heart rate. You can distract yourself by counting how many seconds you inhale, holding your breath for a second or two, and counting how many second you exhale. The American Psychological Association recommends taking deep breaths from the diaphragm, so avoid shallow ones from the chest. It doesn’t matter how specific you get, as long as the main idea stays the same. Inhale slowly, take a second to relax, and exhale, and you should feel much better and way less angry.

Forgiveness: This one can be a huge challenge for misophonia sufferers, but it’s a very good tactic for coping with anger. When you feel triggered, try to simply forgive the person. It definitely does feel like the person triggering you is being either incredibly rude or doing it on purpose, but chances are that neither is the case. If someone is breathing loud, they might just have a cold. If someone is tapping their fingers or shaking their legs, it could be a nervous habit for them. So, while it is a challenge, it is important to not take things personally and learn to forgive, as it will help your anger at the heat of the moment and will help you feel better in the future. 

Express your anger once you’re calm: Doing anything while you’re angry can be a bad idea. If you speak, you might come off as really mean or rude. If you try to fix the problem, your anger might take over and you’ll do something you regret. However, this doesn’t mean that you have to bottle up your feelings forever. Once you’re calm, you should consider how you felt when you were angry. If you have a trusted family member or friend, or you see a therapist, you should let them know how you felt. Sometimes simply saying why you were angry out loud and explaining how you felt can be a major help. You can also pour your emotions into something good like painting, writing, or music. Anything that lets your anger become something a bit more positive is a good thing.

 

Written by Victoria LeBlanc 

May 19, 2016 0 comments
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Coping

Accepting Misophonia

by Sensory Diversity May 19, 2016
written by Sensory Diversity

Don’t Let Misophonia Take Over Your Life

Lately, I’ve been thinking a lot about grief. Misophonia is a tough condition to live with. It takes over our lives, our relationships, and it isolates us. We often feel as though we have drawn the shortest straw. It can be tough to look at others – perfectly normal and able to sit on a bus without bursting into tears. Each and every day we are faced with triggers and unfortunately, they seem to get worse with time and exposure.

I have lost a lot of people in my life, and I have experienced grief in its rawest form. After sitting across from my grandmother, her hand in mine, as she took her last breath, I knew I would have to learn to adjust. Misophonia is not different from this. You have lost something – the chance to live your life trigger-free. Despite your desire to push it away, you must face misophonia.

You cannot repress your emotions. You must find a way to come to terms with it, accept it, and live your life. I understand that this can be one of the most frustrating situations in the world. I have had my fair share of moments, where I have dashed off to the restroom and cried as much as I could. I have kicked the brick wall in an attempt to quell the rage. I have left classes, family dinners, and other important situations to go home to my bed and stay there. I have avoided my life for days and at my worst – for weeks. I admit that I have depression that makes misophonia worse. However, I would have gladly lived most of my days in a state of depression than with the triggers of misophonia.

Sometimes I still feel this way, but it’s not as often. The reason is that I now understand, that like any chronic illness, any friend who slips through the cracks, and any life-altering, unchangeable event out of our control: Misophonia causes grief.

I firmly believe that in order to live a fulfilling life, we need to understand that there is currently no cure. Instead of taking from that hopelessness, we should know that our lives and their meaningfulness is not measured by the amount of days without triggers. This disorder may have a hold, but it is not our life. We are important and we need to understand that this grief should go through the same stages as any other loss.

Denial and Isolation

Denial can come in different ways. People with misophonia may at first believe that they are just ‘hyper-sensitive’ or that it’s their fault. It is also no secret that misophonia often leads to self-inflicted isolation.

Anger

It makes sense to be angry with misophonia. It is a life-changing, existence-altering condition, not to mention the rage that is associated with the trigger itself.

Bargaining

Sufferers may try to find help in ways that have a small chance of working. This can involve using therapies that have either not been tested or approved.

Depression

Since misophonia is an isolating condition, it is not surprising that sufferers have increased sadness and feelings of hopelessness.

Acceptance

You must come to terms with your disorder. It will be O.K.

Accepting that you have misophonia does not mean that you have given up on anything. It is quite the opposite. Instead of spending your time thinking of everything that you have lost and what you cannot do, you should be exploring opportunities to enjoy your life. Living with a disorder does not mean sacrifice – it means adjustments. For example, you could do a degree online, if you cannot handle regular school. Perhaps if you are unable to fly, you could take a cruise.

 

May 19, 2016 0 comments
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Sensory Diversity is the recognition that every individual perceives, filters, and responds to the world in a unique way. While neurodiversity celebrates the different ways we think, sensory diversity focuses on the gateway to those thoughts: our senses.

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