In writing this, my great hope is educators (and parents, doctors, others) will take to heart my experiences. It doesn’t matter the age of the misophonic victim–we all suffer tremendously. The sad thing is misophonia doesn’t get better…it gets worse with age, one picks up new “triggers” over time, and there presently is no cure, no medication or “tried and true”, lasting treatment. (My personal triggers are listed below.)

I am a retired elementary school teacher of 28 years. Currently I privately tutor children who struggle and need extra help. I have suffered, not using that term lightly, with misophonia for 56 years. To the best of my memory I developed miso at age 10…tomorrow I will be 66 years old. Miso has adversely affected every area of my life in one way or another.

Looking back on my teaching career, I have to ask myself how not knowing about misophonia influenced my career as well as my students. I feel guilt, regret, sadness, and a host of other feelings because I didn’t know about this disorder. I did the best I could, with what I knew at the time.

I think back to the many in-services in which I couldn’t concentrate because someone was chewing and popping gum, clicking his/her pen, or attendees were having side-conversations during the presentations. Such are impossible for misophonics to tune out or as we are sometimes told, “just get over it”. We would IF we could. (Unless we are masochists … of whom I know none). Believe me…every misophonic would be ecstatic if a miracle cure would relieve us of this burden.

Faculty meetings, holiday parties, and other school events produced so much anxiety and dread for me. Isolating myself from the possibility of triggers at events was often my way of escape! Staying home was so much easier.

I am Person -#2, as described at the beginning of this blog/article. Where I sit and by whom are very critical to me. No matter where….in-service, meetings, school, church, movies, restaurants, airplanes… I am extremely anxious/fearful about where I will sit because of possible triggers. Especially to be confined with no way out. I’m going to a movie with friends on Tuesday, and I’m already experiencing anxiety! Today is only Saturday. My plan is to get there much earlier than the others, get the back row, and take ear plugs to block out surrounding noises but not the movie. Of course, I also now worry about what the others will think about the ear plugs because I’ve shared this with only 2 of the 8 of us.

As a teacher, I had great relationships with of my students as well as their parents. But I wonder how many of my students struggled with misophonia, but I just didn’t know it……didn’t understand the real reason for some student behavior and actions ….didn’t understand the hell they experienced every day at school fighting triggers. (Remember, the reactions to triggers are very negative, can produce fight or flight, anger) Was miso the reason some kids hated school and cried every morning? It hurts me to think of specific kids, wondering if they had miso and what I may have unknowingly done to hurt them further, or if I could have helped them. This is something hard to think about.

I recently learned that one of my former students is now diagnosed with misophonia. She has multiple learning disabilities so her problems were considered connected to those. Of course, miso was barely, if at all, recognized at that time….4 years ago. Oh, how I wish I had known…the suggestions in this post would have made her life so much easier. Another “If only….”!

We who have miso are reluctant to tell others because it is not a “seen” disorder and appears to others as “off the wall”, that we are seeking attention, or attempting to “make up medical disorders for every little ailment”. Parents may be hesitant to explain the disorder to teachers for those reasons. Or parents may be aware that teachers think of them as helicopter parents who coddle their children, rather than being advocates for their children. Sometimes parents have reasons to be helicopter parents, especially if their concerns seem irrelevant to the school staff. I’ve discovered this to be true since I’ve been working as a private tutor with children who struggle, seeing and hearing the frustration of parents who can’t get appropriate help from the school system. It is important as educators to be aware of the symptoms of misophonia because it may be their task to approach parents if they suspect that misophonia may be a problem for the student. We can’t diagnose, but we can tell our concerns to parents and urge them to seek out help….which they may find, at this point, only in a support group.

My final words to teachers and other professionals in the education system: Test scores, IQ tests, portfolios, classwork, ADHD checklists, and other evaluations DO NOT reveal misophonia. Knowledge of what misophonia is and how it shows itself is the only evaluation we have at this point.
PLEASE study this disorder, become well-informed. This post by “Sublime Speech” (Danielle?) is a great starting point. Miso children deserve more than I was able to provide. YOU have the opportunity to reach out and help your students and even their parents. You will have the knowledge to share with other educators. Most doctors and audiologists are not aware misophonia exists. Don’t be surprised if you find them skeptical. They, too, need to become informed. There is little research at this time.
It is up to us, the informed, to teach others about misophonia, and as teachers, provide a safe place for miso students to learn and grow. Thanks to you educators who stuck with my story and opinions until “almost the end” of this “epistle”.

One more important point:
As a life-long misophonic, I thought I was the only one with “something wrong” (crazy). When I learned that misophonia was a real disorder with an actual name, and that I wasn’t alone or crazy, I felt a sense of relief I can’t begin to explain. I I’m slowly beginning to experience a type of peace about my disorder and no longer feel “lost”. I literally cried for days upon my discovery, and still occasionally do. “Something” had consumed my life, and at last I knew what “it” was.

I , again, apologize that this is so lengthy, but it is important to me (when I find a safe place to post) to let the public know how consuming, dangerous, and debilitating misophonia is….especially for children.

Resources:
http://www.misophonia.com — Excellent primary source for an enormous amount of information as well as a public forum with many categories of discussions. You will also find these resources.
• Misophonia Self-Test
• Misophonia Shop
• Letters to Family and Friends Explaining Misophonia — these are awesome and SO helpful!
• Media (audio and video files)
• Links Concerning Misophonia
• Awareness Logos for Misophonia Projects (free) — Also information on Symptoms and Triggers, Research, and Treatment (see menu at the top of the page)

Facebook Support Groups: Most are closed groups for people with misophonia. Posts circulate among only members of the group… Posts will not be posted on individual’s timelines that others would read.

https://www.facebook.com/groups/misophoniasupport/
“Misophonia Support Group” is an awesome group of misophonics who share their struggles. There I discovered that my battle is almost insignificant compared to others….Misophonia can be so severe that people have commented that they wish they were deaf…others have considered ending their lives because of the agony. Some have reacted physically in anger. My heart breaks for them! Members do everything we can to support all members regardless of the severity. Our group grows every day…. and with very few exceptions, most newbies start their first post with something like, “I’m so glad to find out I am not alone, that this has an actual name, and I am not crazy”! My exact thoughts!

Facebook Group
Parents of Children with Misophonia — excellent; a very active group
https://www.facebook.com/groups/620276931320095/

Facebook Group
Christians with Misophonia — Very good group but needs more participating members to contribute daily
https://www.facebook.com/groups/566213616743035/#

PINTEREST has tons of boards about Misophonia—just put “misophonia” in the search box and many options will pop up.

My Triggers – As promised above
A few of my triggers: By no means all of them! Many of these sounds annoy “normal” people. For misophonics, the sounds produce STRONG negative responses, far beyond that of “normal” people—who don’t understand the difference or the disorder. Pin clicking may annoy someone, but they are able to tune it out. We can’t tune it out and are overcome with intense negative feelings.

CHEWING GUM (physical action and sound), pin clicking, drumming fingers and fingernails, crinkling sounds (as chip bags and water bottles), clanking spoons in drinking glasses, slurping the last drops of drink through a straw, humming and whistling, vibrating bass sounds, keys on some computer keyboards, music leaking out of someone’s earphones, chewing with open mouth and smacking, loud crunching sound, EATING/CRUNCHING ICE, side conversations at meeting, whispering, even slurpy kissing scenes on TV or in public.
My first trigger was the chewing gum….which is a common trigger for most of us. The large number of triggers I have (and more) were developed over time.

Note: My personal consideration:
The purpose of support groups is to air concerns, experiences, and vent. With this comes inappropriate language in posts at times, which I’m also bothered by!! BUT the support and information I get from the group outweighs my distaste for profanity, although the f-word almost puts me over the top. But I make every effort to concentrate on the best of each post. Just wanted to tell you in case this would be a problem. (Occurs in some posts…not the majority) Thanks for hanging in there with me!
Debi Fiegener
Texas Gulf Coast