The 3rd annual Misophonia Conference was a couple of weeks ago. I went to the first one a few years ago in Phoenix. Back then, it was mostly for audiologists and other specialists, but there were about nine misophonia patients, including me, who attended. Even with just the nine, I was completely overwhelmed to be around people who shared my story—and I mean really shared my story, to the same arguments and fights at the family dinner table to an adult life living with significant others and using plastic dishes and utensils.
Three years later, Billy and I were final able to attend a conference together, mostly because it was local. In fact, it was only about a 10 minute drive from our new place. When we walked into the hotel, I could not believe the amount of people standing in the registration line, let alone the size of the room reserved for the event. If I was overwhelmed three years ago, I can’t put into words how I felt looking out on the packed convention room.
One of the major differences this time was the amount of children present. It was bittersweet, really, to see all these amazing pre-teens and tweens running around and forming friendships all weekend. It was exciting to know these kids will have support—they know they are not alone, and they have a chance at growing up strong and confident and owning their misophonia. And if we ever have kids one day, and any of them end up having misophonia, at least I am comforted knowing they wouldn’t have to live through the same childhood I did. And that’s where the bitter comes in—when I think about me and all the other misophonic adults out there who didn’t have anyone to turn to. Adults who grew up ashamed of themselves, never knowing why they reacted so severely to trigger sounds and why they couldn’t just “get over it” as they were told countless times by unaware doctors, parents, siblings, and friends.
But the good news is that many of these adults are learning to own their misophonia now. Meeting other sufferers provides a sort of comradery and a hope that we can get through this—that we can live and still find happiness despite this disorder. Happiness just might come in a different form than we had expected.
I met one lady who decided not to be ashamed and not to try to live her life according to the expectations of others. When her work environment switched to an open office format and kept her from enjoying or feeling successful at her job, she quit. She up and moved to a place she knew would bring her happiness, and she is content with shifting her career options in order to find something that is compatible with her misophonia. I met a man with misophonia who, along with his wife and two young children, are heading out as missionaries to an isolated village in Papua Guinea. These people are choosing to live with happiness and determination in spite of misophonia.
I met other misophonics and their significant others. I saw the joy in the faces of one couple who came all the way from Sweden just to meet others who shared in their experiences. I met another couple from the startup world of San Francisco who were not letting misophonia dictate the degree of their successes, but rather choosing to be open and use the resources at hand to get the word out.
Most encouraging to me was meeting fathers and mothers suffering from the disorder. I once never thought I could ever have children (of course, not literally in the sense I am experiencing now, but more in the sense of how I might be able to be a good and loving parent because of misophonia). These people give me hope and a support group to turn to when the time comes and the going gets tough.
Indeed, to come together and meet people from different phases and walks of life brought about a strength I didn’t know I had. We have a common element between us, and that makes us powerful and able to affect change. It took me 27 years to “come out” to my closest friends about my misophonia, but with fellow sufferers I was able to jump in and talk openly about some of my deepest struggles with these strangers.
Both Billy and I walked away from the conference with hope and feelings of support. For those readers with misophonia or with loved ones dealing with this curious disorder, I encourage you to check out the Misophonia Association website and commit to attending the conference next year. You’ll be glad you did!