Should I Tell Others About My Misophonia?

Why should you tell someone about Misophonia?  What good will it do?

As a Misophonia sufferer I have spent my life trying to avoid social situations, being triggered at the workplace, being labeled as a “bitch” because of my sudden attitude changes due to those triggers.  Come on, think about it, who is really going to believe you when you tell them that the sound of them popping gum drives you mad?   “Just ignore it,”  “Don’t pay attention,” or “Tune it out” are the common responses.  Why?  The majority of people do not know that Misophonia is a neurological condition. They hear the same noises that make us want to attack and it does not phase them.   When you tell them you suffer from Misophonia, your explanation is promptly dismissed because of lack of information.  “You are making that up.”  As a result of these reactions the Misophonia sufferer experiences many negative emotions such as hopelessness and despair then may start to isolate themselves.d07b22519242e46d5d8823f337d04021

Why bother telling people?  They will just think I am crazy and it is all in my head.  You cannot allow discouraging opinions to negate the fact that Misophonia IS real.  Granted even if they hear the term Misophonia most people may continue to pass judgement but that is not your problem.  You cannot let the ignorance of other people discourage you for advocating for yourself.  The average person is not going to do anything to raise awareness of this condition, therefore the only way to raise awareness is for Misophonia is to spread the word about Misophonia.

Not to say that you need to walk up to every person you see and announce, “I have Misophonia.”  But let’s think about the different groups of people that it would be beneficial to explain Misophonia to.

FRIENDS AND FAMLet’s start with family and friends.  Why is it important for them to know and understand?   Misophonia is not just your disorder because it also affects everyone in your family.  Although you suffer with the torture of sounds, it is unrealistic to think that you have control your of your emotions when triggered.  As a result, your friends and family also suffer from the repercussions of your trigger reactions.  Knowing your triggers will hopefully help them being more conscientious of their actions.

Whether you are in the workplace or a student, you are spending the vast majority of your day with at work or school.  Therefore it is relatively important to share your condition with teachers and/or your human resources department.  Even if they do not understand the condition, by law they are required to allow reasonable accommodations.   For students, simple accommodations such as the use of ear plugs or being allowed to test in a separate area can be very beneficial to your success.

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For employees, many accommodations can be made depending on the industry.  Think about it in terms of workers’ compensation. Employers will modify job duties for the injured worker to avoid lost workday cases.  They should also offer those modifications to you.  If you share close work quarters with others, you may want to share your condition with them.  Although they may not always understand, someone may surprise you.  I share an office with another lady who spends her day triggering me.  I considered telling her about my Misophonia but I was afraid that she would think I was crazy.  We sat down with our supervisor and I began to explain my Misophonia and triggers to her.  I was surprised that she did not judge me; she even asked questions.  From that day on she has made conscious efforts to avoid doing things that trigger me.   In return I have been more vocal about when things are triggering me.  Words cannot express my gratitude for her acceptance.  As for my other coworkers, I feel that the less they know about my condition, the better.

 

The most challenging person that you should share this condition with is the one person that you would expect to be the Telling friendseasiest: your primary care physician.   You should not expect that just because there is an MD after their name that your doctor is a medical expert and knows about every possible condition,. They don’t.  It should go without saying that you should not trust treatment options from a medical provider that is not educated and trained in Misophonia.  There is currently no cure, no proven treatment nor is there a magic pill for Misophonia.  Please do not allow your doctor to say, “Let’s treat your issue as this other disorder” and hand you a prescription.   Frighteningly enough I have seen many physicians prescribe anxiety or anti-depressants.   Personally I would not be comfortable having these medications prescribed by anyone other than a psychiatrist who is trained in these types of disorders.  The wrong action plan for treatment may cause you more harm than good.  However it is still important that your physician be made aware that you suffer from this disorder.  Provide your doctor with some articles on Misophonia and its research and take the time to explain your triggers and reactions.  Perhaps someone else has mentioned the same symptoms, but the doctor did not know it was a condition.  By putting a name to the disorder, you are raising awareness.  Encourage them to read Misophonia International magazine and check out the website.

The last several months I have been really trying to focus my efforts on raising awareness.  During several explanations of Misophonia people have said, “Oh yeah, you know my husband/wife gets that way when I eat potato chips.”   People DO know it is a “thing” but they may consider a quirk or a personality flaw rather than an actual disorder.

Here is some food for thought:  How long have you suffered with Misophonia?  When did you find out that it actually has a name?  How did you feel when you found out it was an actual disorder?   Exactly!  Can you imagine how many people are out there suffering in silence because they think they are crazy, or mean spirited?    Isn’t that how you felt?  Do you think it is worth it to try to explain Misophonia to someone even if they do not believe you?  Even though they may not react when they hear about it, you are planting a seed so if someone else mentions it in conversation, a light bulb may go off.  Wait!  Maybe this Misophonia IS a real thing.

You cannot force someone to understand Misophonia, so if your explanations are met with disbelief please do not be discouraged.  Remember that there are still people out there that think OCD, depression, autism, etc. are “made up.”  You can feel at ease knowing that you are trying to help yourself.    If sharing your story could help ease your stress and triggers, isn’t it worth it to try?

Speak up about Misophonia. Be heard.

You can submit your own story here.

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.