I Have Misophonia… Hear My Voice

volunteering

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.

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.