One of the toughest things about misophonia, a disorder that causes severe reactions to normal sounds, is talking about it. While some of us can be great advocates for ourselves, most of us are stymied by how exactly to bring it up with coworkers, acquaintances, family members, romantic partners, and anyone we meet who needs to know about our condition.
We may second guess ourselves because ‘unseen’ diseases are, well, less visible than physical impairments. Society is coming around on this matter and you can help by being your own advocate. But, I admit, most of us are not good at this. I fail at it more often than I like.
Sadly, it’s all too easy to avoid a person or situation instead of speaking up to tell another person that their gum smacking, nail biting, or pen clicking is keeping you away. We must assure ourselves that talking almost always improves things. It’s invigorating how these conversations often turn out better than we initially feared.
I started SoQuiet, a nonprofit organization, to tackle this exact issue. SoQuiet helps others spread awareness about misophonia by providing resources for educating others. When others understand our suffering and our needs, everyone grows and we can live happier lives.
Here are some thoughts on speaking to others about misophonia.
Validate and Inform
Misophonia is a real, well-documented disorder. It is studied, diagnosed, and many professionals, from audiologists to neurologists and therapists, help misophones cope with it.
If others are not aware of misophonia or are skeptical, it does not discount its validity. Their ignorance is a great place to start by informing them and speaking confidently, knowing that you have a lot of information to help support you. Speaking to others about misophonia is no different than talking about diabetes, arachnophobia, or any of the hundreds of other disorders that exist.
If you speak with doubt, others will doubt you. A quick check-in to assure yourself that you have a huge community of professionals and other misophones who have your back can help.
At SoQuiet, we offer free, wallet-sized cards for misophones to hand out that give a quick overview of the disorder. Recipients will get a little info and are encouraged to look online for more information.
Cite Reliable Sources
A quick online search will yield many quality articles on misophonia from trusted medical sources, too.
If you are speaking to someone who is unaware of misophonia, sending them a link to one of these articles can help. I wrote a Medium article explaining my own account of the struggles I have had with misophonia and common coping techniques I use to manage it. I frequently send others a link to this article and they are typically receptive and ask questions. This is all good.
Misophonia is an unusual affliction; it doesn’t make immediate sense to other people when they first learn about it. Misophonia, to the best of our current knowledge, is a neurological disorder [a miscommunication in our operating system’s sensory processing circuits] which leads to mental health troubles such as depression, isolation, and severe anxiety.
But, when speaking to others, it is sometimes convenient to compare it to other disorders that people are more familiar with.
Most of us understand things like allergies, phobias, and PTSD. While these are very different disorders from misophonia, they share some characteristics that others can understand.
All of these are known as having specific, often otherwise benign, activators that create a difficult and unavoidable reaction in some people. A normal food can cause an extreme, sometimes life-threatening, allergic reaction in certain people. The situations that trigger a phobia or a PTSD episode can vary widely and seem odd to outsiders, but nevertheless, the general public gets that these things happen and they understand that the person being affected is suffering. A normal person wants to help out.
Using this awareness can help us frame misophonia.
There is an old therapy saying: “When someone isn’t ready to listen, there is nothing you can say right.” There are some people who are stubborn and will doubt you, mock you, or ignore your requests. They just don’t know.
Can you count someone as a friend if they intentionally tease you in a hurtful way? Do you trust someone who ignores or ridicules a genuine request for help? If someone doesn’t support your happiness, do you need them in your life right now? These are the questions you might need to answer for yourself.
It’s not unusual for people to reject the things they don’t understand. This is why I rely heavily on providing information.
My own experience has been mixed though positive, mostly, when I bring up misophonia. A previous employer refused to move me to a different position despite my speaking with several managers about misophonia. I left that job and now work for an employer who has been more understanding and receptive to it. They bought me a pair of noise-cancelling, over-the-ear headphones to use in the office and instituted a “no food or gum” policy just for me. We are also making small strides to get me working from home due to an ADA request I submitted.
When I first began experiencing misophonia in the early 1980s, there was no knowledge of it as a disorder. It had no name. It had no recognition. I had no clue that anyone else was suffering like I did. In fact, I often thought the opposite: that perhaps everyone was as annoyed as me but could control it better than I could so something must be wrong with who I was. I wondered how others were able to tolerate being around noisy eaters. It made no sense to me.
Now, things are so much better and there is still a long way to go. There are communities online for misophones. There are books about it. Medical professionals are increasingly interested in understanding it. Most importantly, I have a recognized term to use. It has a name.
Misophonia awareness is gaining a lot of wonderful ground lately, and what a relief that has been. After decades of thinking I was a freak because I was so particularly bothered by certain sounds [and some visual activators, a topic for another article], I find a lot of strength and assurance any time I hear it mentioned in the media or when I am able to talk to a new acquaintance about it and they understand or, even better, are truly interested in learning more and helping me be content and happy. Sometimes a person I meet will say, “Oh yes! My friend also has that.” They know.
If you or a loved one suffer from misophonia, I’d love to hear from you. I’m happy to help and learn about your experiences.