Author

Vicki Sladowski

My name is Vicki and I am a lifetime sufferer of Misophonia. I grew up thinking I was a mean, hateful monster, only recently did I learn that I have Misophonia. Like most sufferers, when I found out I had an actual disorder I was so relieved to know that it is not my personality, and most importantly there are people who UNDERSTAND what I am going through and I how I feel. We are not in this alone.

Awareness

Explaining Misophonia to Your Child (Ages 6-10)

written by Vicki Sladowski

Ages and Stages- Explaining Misophonia to your child – Part 2

As a parent, it is your job to do your best for your children. A mom is expected to hold in her fears and put on a brave face for everyone. Moms cannot get sick but when they do, it doesn’t matter. We must be the soldiers that carry on, making sure everyone is dressed and fed and ready to go. All the while, we are dying inside.

What happens when you cannot be your best, no matter how hard you try? It is ok not to be okay. Accept that you are no one expects you to be perfect. Taking some of that stress off will help tremendously.

If you suffer from Misophonia, you already know what a challenge it can be to explain your condition. People do not understand it, some may even make fun of it and go out of their way to trigger you for their own pleasure. Why even bother explaining it to your kids, right? Wrong!

First of all, not everyone has the same mentality. Secondly, despite being the loud little monsters running around wreaking havoc on your life, children do have a very understanding and sympathetic side. A child’s brain is also like a sponge, take advantage of that fact. Not only will you help yourself, but you will also raise your child to be more sensitive of other’s needs. Train them while they are young, mom!

(Obviously, I am writing this from a mother’s perspective but it certainly applies to daddies too!)

How do you explain Misophonia to your children?

Ages 6-10

When you are trying to explain Misophonia to a child, you should put it in terms that they can understand. Depending on what kind of triggers that you have, you can customize your explanation. Hopefully by this time you have had some conversations in which you have prepped your child for situations they may encounter in the classroom. School-aged children tend to pick up bad habits from other children to be “accepted.” Sadly, this will often involve teasing or bullying other children because of their differences.

At this age, children have a better understanding of things that are going on in the world. They are school aged so chances are they have encountered some form of sensory disorder through their peers. It is very important at this age that your child understands the severity of Misophonia as it will translate to other areas such as a child with OCD or autism.

Taking advantage of opportunities when you are out and about to educate your child on why some children/people are different is key. Some simple things to teach your child would be:

– Do not stare at someone, just because he or she looks different. They did not choose the way they look and sometimes, they cannot help the way that they act.

– Do not judge people by the way that they look. Chances are that the person with the craziest smile is probably the nicest person that you will ever meet.

Be respectful. If someone asks you to stop chewing gum, or chew with your mouth closed, be polite and try to comply, there is probably a reason they are asking.

How do these examples apply in Misophonia? By taking these opportunities to show your child that little things like using an inside voice can make such an impact on others. Pretty soon, when you catch your husband chomping on a handful of chips and you l hear your sweet little Katie saying, “Daddy, don’t do that, it hurts mommy’s ears.” It will all be worth it.

When my children were in the 6-10 age group, we did not know that Misophonia had a name. My children were raised to chew with their mouths closed and not talk with food in their mouths. They knew that they could snack on crunch foods as long as it was in another room. There was no question that these triggers drove me insane but we did not know why. Since that was the way that they were raised, in our case it was never an issue. But what if your child was not raised the same way? How do we get them to understand?

Kids want to play, run and have fun. Unfortunately, these activities tend to come with screaming and repetitiveness. You don’t want to stifle your child’s right to be a kid. How do you get them to quiet down? Hopefully, your child will be respectful enough to have a simple conversation. Sit down with them, explain that there are certain sounds that “trigger” you. Please do not use words like “bother” or “annoy” as they can possibly do more harm than good in the explanation. Being triggered is very different than being annoyed. A conversation can go something like this…

Katie, mommy has a problem with her ears, when I hear certain sounds, they are called trigger sounds and they can cause me to get very angry and crabby and I cannot control those feelings. For example, do you remember the other day when you were digging through your legos and I started to cry and ran to my room slamming the door? Well, I started to cry because I was so triggered by that sound, I needed it to stop. I had to get away from that sound. I still want you to play and have fun, how do you think we can have lego time without triggering mom? Engage your child to help find some solutions, including them in the problem-solving aspect will show better results than saying, “you can’t play with your legos!” If after awhile Katie has not come up with it, you can pop in with, “Hey! I have a great idea! Why don’t you close your bedroom door when you are playing with Legos?” Children of all ages have the tendency to want to protect mom. Allowing them to feel they are contributing to the compromise will make it more effective. I think if you dictate the rule that your child may have the urge to resist and possibly use the opportunity to retaliate if they are being punished for a bad deed.

You may need to remind Katie that she needs to use an inside voice. When kids are playing, they can get a little too excited and start to scream. “Please, Katie, remember we need use our inside voice.”
I cannot stress this enough, make sure your child knows THEY are not the problem, it is the SOUND that triggers you, NOT your child. If an adult takes it personally, a child is about a thousand times more likely to feel like it is them. It is up to you as their parent to help them understand this is YOUR condition and you have no control over what triggers you. It is NOT THEIR FAULT!

Another thing to explain is that sometimes, mom needs a “time-out”. This is actually a very critical piece of the puzzle. If you are triggered, you need time to decompress or the reaction will escalate. Katie, sometimes when I am triggered, I just need a few minutes to myself. What do you think would be a good way for me to have a time-out? Again, allowing your child to participate in the conversation will allow them to feel as they are helping. Who knows? Maybe they can come up with a solution that can help you relax. If your child does not know that you are triggered, your behavior and actions can be interpreted as “mom is mad at me”. Just be honest with them. You are not shielding them from anything, you are preparing them for the real world. Do you really want your child believing that you hate them because they did something so petty as biting a fork?

There are so many mindful activities that can help relax you. Why not invite your child to join you? It can make some great bonding time with you while allowing you some time to just relax. Stick with simple activities that do not involve a lot of noise. What do you and your child like to do? Again, finding mindfulness activities that do not involve your triggers. Maybe go for a bike ride together? Can you play a board game or do a puzzle together? Maybe legos do not trigger you, why not start a lego project together?

These days parents tend to shield their children from some realities. It is a personal parenting decision, I am not trying to tell you how to parent. However, with a condition like Misophonia, I honestly believe that hiding it from your children could cause harm than good.

November 7, 2018 0 comment

Awareness

Calling Dr. Google

written by Vicki Sladowski

The sound of chewing drives you insane. I must be a heartless bitch, you think to yourself. Why? Why do I feel this way? One day you are sitting in front of your computer and decide to call on your trusty friend, Google. Beware…

As you already know, the internet has so much useful information. Just as it has helpful information, it also has harmful or not so accurate information. Let me just say- consider the source and do not believe everything you read. I am not trying to deter you from using Google, I am just saying that you need to be careful. The wrong information can be harmful.

Misophonia is a condition in which sounds have an extremely adverse reaction. When someone who has never heard about Misophonia does a Google search some typical searches may be:

Why does this sound annoy me?

Why does chewing make me angry?

Why am I bothered by clicking?

I just did a few of these searches and the term Misophonia popped immediately up. This is a relatively recent development. A few years ago, it took a more in-depth search to find the word Misophonia, a term that literally means hatred of sound. I find this term very misleading and inappropriate because hating a sound does not create the same reaction as being triggered by a sound. Some links will indicate it is a made-up condition and others will say it is a mental health issue. Misophonia suffers are also made out to be crazy, as if we do not feel crazy already. Am I right? Let me assure you, Misophonia IS a real condition and you are NOT crazy. (At least by being enraged by sounds). 😊

Once you find the term “Misophonia” the next logical step is to start to click on the various links because you are so desperate for relief. This is where you need to be careful. It is important to know that although there are current research teams working on Misophonia, there is not a current medication or treatment for this debilitating condition. You may stumble upon people claiming they can help, people recommending treatment such as exposure therapy. Let me stop right here and tell you- it does not work. Exposure to trigger sounds makes your tolerance to that trigger even worse. Why would you deliberately torment yourself by continually listening to someone chew or whistle? Your LIFE IS exposure therapy.

Suddenly you have the overwhelming need to see a doctor, for some reason having a medical professional confirm the diagnosis seems to be very important for sufferers. Possibly, the validation can negate the feelings of being crazy that most us have experienced. This can be very difficult. Most providers have never heard of Misophonia, it may be easier to say that there are only a select few medical professionals who have heard of it. Narrow that down to even fewer who have taken the time and dedication to research it. Some people immediately call their primary care physician and are very disappointed when they have never heard of Misophonia. If you think about it, many of us have seen various doctors over the years and have mentioned our repulsion of sounds, and those concerns have been ignored or brushed away. Even though this condition has a name, unless the provider is familiar with Misophonia it will continue to be dismissed. If you need an official diagnosis for work or school accommodations, it is best to skip the diagnosis. There is not a DSM code for Misophonia (A DSM code is a number that medical professionals use as a diagnosis code for billing and insurance purposes). Until Misophonia is in the DSM, it is going to be very hard to get medical recognition. If there is no DSM code, it must not be real? Wrong!

This is truly a case of the blind leading the blind. A doctor that is unfamiliar with the condition tends to treat it as a condition with similar symptoms. One misconception is that Misophonia is a mental illness. Although some Misophonic reactions may mirror mental illness it is not the same. Nowadays doctors are so prescription happy, it’s easier to write that prescription than to take the time to find out WHAT is wrong and WHY. Oh, this must be a symptom of anxiety, let me prescribe you this anxiety medication or this other medication for depression. Taking a medication for a condition that you do not suffer is the same thing as taking Tylenol for cancer or diabetes, it will not do you any good. Just because it is prescribed by a doctor does not mean it is the right method of treatment. Taking mental health medication when you do not have a mental illness can cause you to display symptoms of depression, etc. that you have never previously experienced. After several years of various medications, my doctor finally realized that my anxiety is all auditory-related. Hello! Isn’t this what I have been saying all along? The MD at the end of the credentials is just a title, it does not by any means equate to “all knowing”.

There seems to be another hot “treatment” being talked about called Functional Neurology. Please proceed with caution. Although I tend to believe “give anything a try” in hopes for some success there are several things to take into consideration. Finances! I am very apprehensive of any provider that does not accept insurance. Many FN’s are cash only. I wonder why? Do you really think they are in it to HELP? Or are they just trying to make some serious cash? Although there have been many suffers report some improvement, for each person with positives, there are also people with negative stories that they may or may not share. If you are willing to spend thousands of dollars out of pocket without guarantees, that is your choice. I also must wonder if it’s is the honeymoon effect? You want to believe something works so it does, for a while anyway. Prepare for the potential to crash and burn. I am not knocking this treatment, as there is not enough medical evidence to prove or disprove it. With Misophonia, what works well for one sufferer can make it worse for another. One person had a positive experience and suddenly many others are immediately jumping aboard the bandwagon, travelling cross-country spending thousands of dollars in travel and treatment in hopes for relief. It looked like a true cult following.

I used my friend, Dr Google and found a local Functional Neurologist who accepted my health insurance, so I opted to give it a try. Why not? It is not going to cost me anything, I do not have to travel. I did not show any improvement with my Misophonia, and I was very fortunate that it did not get any worse. Others were not so lucky. Would I call it a total waste? No, because I did show improvement in other areas. Regardless, I would not discourage the treatment, just do your research and decide for yourself if this is an option for you.

Many articles you will read are written by individuals without firsthand knowledge of Misophonia. How can you talk about something that you have no knowledge based on what you are reading on the internet? Do they live with someone who suffers? What makes them qualified to offer advice? Food for thought.

Marijuana and/or CBD oil is another “trend”. Personally, this is not something that I am willing to try based on my own beliefs. (To each his own) Some people swear by it, others say it does not help. A perfect example of what I am talking about with knowing your source. I have read so many comments and testimonials on the use of these substances, but I cannot tell you if they help or they don’t. Are people using it as an excuse to use marijuana? I don’t know. Based on my knowledge I know that marijuana usage slows response times, therefore it makes complete sense that your brain would have a slower reaction to the triggers. A slower response I understand, I cannot see that it would eliminate the reaction.

When I write my stories, they are based on my life and experiences, the life of someone who suffers from Misophonia. I share my experiences because I know many sufferers can relate, I want to help raise awareness for Misophonia. I also do not want people to be misled into thinking that they can be treated with medications or other treatments. Feel free to Google all you want but take it all with a grain of salt. It is your well-being that is at stake.

November 5, 2018 0 comment

Advocacy

I have Misophonia too! No, you really don’t.

written by Vicki Sladowski

How to explain Misophonia to help people understand.

There is nothing more frustrating than suffering from a disorder that no one understands. Or is there? I am sure that at some time you have tried to explain Misophonia to a friend, co-worker or family member. They claim an immediate understanding then make that dreaded comment. “Oh, I think I have that too, I get so annoyed when someone…” The blood rushes to your head, anger and fury are building inside you. You are biting your tongue when you really want to blurt out, “NO YOU DON’T!”

There is an immense difference between being “annoyed” by something and being “triggered” by it. A distinction that very few people seem to understand. The question is, how can you get them to understand?

Although the literal definition of Misophonia translates to “hatred of sound” that description is very misleading and diminishes the severity of the condition to a non-sufferer. For example, I hate when my husband throws his socks on the floor, the laundry hamper is only two feet away. That dirty pair of socks does not send me into a mind-numbing rage, it annoys me but, guess what? I can get over it and move on with my day. Sure, I may mumble something under my breath, but it ends there. When you suffer from Misophonia, it does not end. It festers inside the sufferer, and reactions vary based on many factors.

It seems to be safe to say that when people explain Misophonia, they use terms that lessen the impact of the condition. What kind of words?

ANNOYED– Yes, triggers are annoyances, but they do go beyond that. Being annoyed does not typically send someone into a raging meltdown.

HATE– Most trigger sounds are everyday noises that at some point in our life may not have always been a trigger. Repeated exposure build up an intolerance with our processing of these sounds. In many cases, we do develop a hate for these noises. Generally speaking, when we hate something, it does not mean that it is a trigger. You can avoid things that you hate, you can ignore them or tune them out. With Misophonia, you cannot always avoid triggers and you certainly cannot ignore them or tune them out.

Frankly, some of our current trigger sounds may have been sight or sounds that we previously found pleasurable. Then one day, something changes and they become triggers. You can develop a hatred for these sounds because they trigger you. They are not triggers BECAUSE you hate them.

BOTHER/ BUG/ IRRITATE– Similar to hate, there are things that can bother someone but that does not make it a trigger.

Words like hate, bothered, annoyed do not portray a clear understanding of Misophonia. Why not? As I have stated above, you can easily avoid or ignore things that bother you. But you cannot ignore or tune out a trigger.

Lately, I have found myself keeping it simple, with the less is more theory. “I have a condition where certain sounds invoke an immediate fight or flight situation.” For some reason, people will accept that at face value without a bunch of questions. Not that I mind questions, in fact, I encourage them. I see it as a chance to help raise awareness of Misophonia. A few months ago, I was triggered in a store and went into flight mode literally crashing into a door resulting in a very black and purple eye. People would look and ask what happened. “I was triggered by a sound and went into fight or flight mode and crashed into a door.” Ahh, I understand.

Please do not take this as criticism if you have used these words, as we all know Misophonia is such a difficult condition to understand. It is definitely an “outside the box” disorder. Although we seem to share some common triggers, we all have different reactions and coping mechanisms.

Let’s take a look at some accurate words or phrases we CAN use to accurately describe Misophonia.

TRIGGER– Defined my Merriam Webster as ” something that acts like a mechanical trigger in initiating a process or reaction” Think of it like a gun going off, sufferer or not, this sudden sound will evoke the fight or flight response, the difference is, a Misophone will not calm down as quickly as someone who is not. Maybe if you explain that certain sounds FEEL like a gun being shot suddenly will help someone understand how it actually feels.

EXTREME SOUND SENSITIVITY or HYPERSENSITIVITY TO SOUND “excessively or abnormally sensitive”. We hear sounds that others cannot, for the most part, we have what I refer to as supersonic hearing. I can hear sounds like the clicking of jaws when a person is chewing, or the sound of someone swallowing. Sounds that most people do not even notice, and if they do, it’s really not a big deal because they CAN ignore it. When a Misophonia sufferer tries to ignore it, our brains do the opposite and zone into the trigger sound.

Once we find the KEY words that accurately portray what a trigger is and how it makes us feel, others may gain a better understanding of Misophonia.

August 10, 2018 2 comments

Advocacy

Fight or Flight and Misophonia

written by Vicki Sladowski

The fight or flight response refers to a natural reaction that a person experiences during a time of intense stress or fear. What does that mean? It is a natural response for your body to in a crisis, essentially your body has a built-in defense system.

Imagine that you are walking down the street and someone grabs you from behind, points a gun in your back and demands your wallet. His buddy ties your arms and feet and puts a gag in your mouth. How would you react? It would be highly unlikely that you would be calm and say, “sure, no problem, here you go, have a nice day.” No! Your fight or flight response will be instantly activated. Your blood pressure will increase, you will feel panic, possibly break into a sweat, you are anything but calm. There is a huge rush of adrenaline. You may experience super strength and try to fight back or you may be frozen in time praying for this event to be over, filled with hopelessness. What can you do? You cannot get away, he has you tied up. He takes your wallet, your cell phone and keys and in the blink of an eye, they are both gone.

After this type of traumatic event, do you honestly think that you can just calm down and go back to your normal happy mood after the assailant leaves? Of course not! You are going to need ample time to settle down and most likely this event will continue to haunt you for days to come. In all likeliness, you are going to be nervous about walking down that street again.

I am sure that you are asking yourself, “what the heck does being held at gunpoint have to do with Misophonia?” Good question. Although the event itself does not, the fight or flight reaction is something that a sufferer experiences a great majority of the time. I know it is very difficult for someone who does not suffer from Misophonia to understand the disorder, but I think it is just as important for them to understand the fight or flight reactions that we live with because of the triggers. Common assumptions are that we can ignore or tune out the noise, but we cannot. When we are triggered our fight or flight response is instantly activated.

Of course, there are other examples in which a person can experience fight or flight, but I wanted to give you an example of the feeling of pure terror and helplessness because that is how a Misophone feels when triggered.

Now, imagine if you lived most of your life in that fight or flight mode. Misophonia is a condition where sounds activate the fight or flight response, period. We have no control over what triggers us, nor can we control our fight or flight response. Just as the victim above will have a different reaction to the above situation, a Misophone will also react differently to triggers.

You have heard the term “sound rage”, this is when the sufferer goes into fight mode. A Misophone can literally go from being the nicest person in the world to the Incredible Hulk in seconds from exposure to a trigger sound. We are not even talking about prolonged exposure, it could be as simple as one quick click of a pen. Just because the click stopped does not mean that our fight mode does, it will take a significant amount of time to recover from that trigger. For some people, it may take a few hours, for others several days. Obviously, other factors should be considered, a person that is hormonal, tired, hungry and anxious will most likely have a stronger reaction to the triggers.

When a Misophone is triggered and goes into flight mode, basically they try to escape their triggers. A mild trigger might make someone get up and leave the room, a more severe reaction will mean they storm off, as fast as they can. It is important for a sufferer to have a safe place, a place that they can go to get away from triggers. Typically, this is a room in the home. In my case, it is my bedroom. I can close the door, turn off the lights and sit in the dark, I can plug in my wave lamp, or I can just curl up in a ball and cry my eyes out. No matter what it is that I am doing, in my case, it is very important that I am alone. My family knows (and it took a while to get them to realize it) that I need my quiet time.

Away from home, it’s not so easy. I do have a severe case of Misophonia which greatly impacts my daily life. If I must go to an event, I spend a decent amount of time planning my coping strategies. What if this happens? Where can I go? I have been stuck in situations without a plan and the consequences were brutal. Just as a school or business has an emergency plan, I have an emergency plan for myself.

Reactions do not necessarily have to be fight OR flight, in many cases it can mean fight AND flight. Many times, the fight mode hits first, rage and anger hit, then you realize, “I just have to get the hell out of here.” There is nothing worse than being in the flight mode and you have no escape. I have had several situations with my daughter, she is terrified that I will hurt myself and many times has tried to obstruct my path to escape. Just thinking about it makes me feel anxious and overwhelmed. My advice for a sufferer is to always have an action plan. You know your triggers, you know your reactions, be proactive.

My advice to friends and family, please try to understand that we cannot control out triggers or reactions. Please give us the space we need to cope and recover. Please try to understand that this is something we cannot control.

Fight or flight, it may be our body’s natural defense mechanism but to a Misophonia sufferer, it is more like torture.

June 8, 2018 1 comment

Advocacy

Misophonia Work Accommodations: It’s Your Right To Ask!

written by Vicki Sladowski

Living with Misophonia is a struggle for all of us. How do you work with Misophonia? Imagine working in an office, which you would assume is a quiet atmosphere. WRONG! An office has an infinite number of triggers, from keyboards, shoes on the floor to those annoying co-workers who always have an endless supply of noisy snacks at their desk. What do you do? How do you cope? How do you get through the day without going postal? REASONABLE MISOPHONIA WORK ACCOMMODATIONS.

In the United States, you have a right to ask for reasonable accommodations under the Americans with Disabilities Act (ADA). The thing to remember is that employers are only required to accommodate your restrictions if they are reasonable and do not cause undue hardship to the employer.

MYTH- I do not have a disability, do I?

FACT- Misophonia is not recognized as a medical condition under the DSM, that does not mean it is not an actual condition. “The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity.” As a sufferer of Misophonia, it definitely qualifies as a disability.

How do you go about getting reasonable accommodations? It is not as complicated as you think. Many people are afraid to ask for accommodations because they are afraid to lose their job. YOU CANNOT LOSE YOUR JOB BECAUSE YOU HAVE A DISABILITY. Would you rather step up and advocate for yourself or continue to suffer? That is a question that only you can answer.

I am going to provide you with some general guideline to use to help you get work accommodations. You will be pleasantly surprised at what a difference they will make.

Step 1 Preparation

Make a list of your triggers in your workplace. Next, evaluate ways that can make those triggers less distressing. Some examples of possible triggers and possible solutions might include:

Trigger- Coworker that talks very loud on the phone all day

Possible accommodation- Ask for permission to use noise-cancelling headphones. You can always put a sign on your desk or cubicle wall “Wearing headphones/earplugs, please gently tap me on the shoulder if you need to speak to me. Thank you.”

Trigger- Your workstation is next to the copy room, and the sounds of the copiers, printers and possibly heavy foot traffic

Possible accommodation- It could be as simple as relocating your workstation away from the copy room.

Depending on the workspace, some accommodations can include a private office, ability to wear noise cancelling headphones, relocation of your work station, etc.

Step 2- Draft a letter to your Human Resources Department.

Keep it simple. Less is always more.

Example:

Date

To:  

From:  

Topic:   Requesting Workplace Accommodations

I am INSERT TITLE employed by INSERT COMPANY for XX years  

This letter serves as my official request for work accommodations under the ADA.

I suffer from a condition known as Misophonia/Abnormal Sound Sensitivity Processing Disorder, a severely debilitating condition. As a person with this disability, I am requesting reasonable accommodations to allow me to perform my job duties.

COMPLETE THIS WITH YOUR OWN REQUESTS. 

i.e.  The ability to wear headphones

I would like to request a meeting to discuss some options for accommodating my disability that can be mutually beneficial to all of us. I would appreciate a written response within 1-2 weeks. Thank you very much.

Sincerely,

Your Name

Be prepared, your employer may request supporting documentation. Find out what documentation they specifically require. Don’t panic, a simple letter from your physician should be sufficient documentation.  Typically, once the documents are in place, you will need to update them annually.

If you have any questions about disabilities in the workplace, there is a wonderful organization called the Job Accommodation Network (JAN) which offers free, expert, and confidential guidance on workplace accommodations and disability employment issues. (www.askjan.org)

Vicki has worked in HR for many years. For a sample accommodation letter to take to your doctor and have customized, please see here.

March 29, 2018 6 comments

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