If you know about misophonia and misokinesia, it may be because you live with these two disorders or because you know someone who does.
I have lived with misophonia and misokinesia since I was a child, but it was just very recently that I was able to put a name to what I was feeling physically and mentally when facing a crisis with one or both conditions.
What is misophonia?
Misophonia is a disorder where specific and often repetitive sounds trigger an extreme sensory reaction in the person hearing them.
What is misokinesia?
Misokinesia is a disorder where an extreme sensory reaction is triggered by movements and visual stimuli.
You can have misophonia without misokinesia, but they often work as a pair. Some triggers are only auditory, some only visual, and some are both.
What does it feel like to have misophonia or misokinesia?
When triggered, the person can face different types of physiological and emotional reactions: annoyance, stress, difficulty focusing, anger, panic, fear, the need to flee, physical pain, distress, an increase in heart rate, muscle contractions, a sensory meltdown, etc.
When the trigger is very intense, the brain perceives the repetitive sound or movement as a danger, enters survival mode, and activates a fight-or-flight response. When I tried to manage my misophonia and misokinesia with my psychologist, we did it through the prism of phobia.
There isn’t one way to explain what misophonia and misokinesia do to a person because there are so many different situations, different triggers, different exposures to them, and different reactions.
What are common triggers for misophonia and misokinesia?
Common misophonia triggers include the sound of people chewing, popping knuckles, nail biting or clipping, slurping, and repetitive environmental sounds such as clicking or hammering. The sound of nails on a chalkboard can trigger a misophonia-like reaction even in people without the disorder; imagine feeling the same way when someone next to you is chewing their food and you’ll get an idea of how misophonia can disrupt someone’s life.
Common misokinesia triggers include seeing someone nearby fidgeting or bouncing their leg, or repetitive environmental visual stimuli such as flashing lights.
How severe is a person’s reaction to a trigger?
After countless exposures to misophonia and misokinesia, I found that there are three characteristics that explain the level of intensity of the reaction.
First, the trigger.
There are a lot of different auditory and visual triggers, but common ones are chewing sounds, nail-biting, fidgeting, pen clicking, loud breathing, snoring, music, and sounds coming through the wall. Not everyone has the same list of triggers and not everyone scores them at the same rank. For some, one trigger will result in a low or mid-range reaction, but for someone else, it will be the worst trigger ever.
Then, the exposure, the situation.
If you are exposed, will the situation last long? Can you escape it? Is it a one-time thing? Will it likely happen again? A lot? Did it happen before? Who is doing it? Your neighbors? A stranger in the subway?
The length and the predictability of the situation play a role in the reaction to the trigger. If this is your first exposure to one trigger, it may be just a bit annoying at first. If this is the 100th occurrence and you know it will happen again, you can become physically and mentally exhausted, angry, and/or very frightened by it in only 1 second. The more you’re exposed to one trigger, the more your tolerance to it decreases.
And finally, the state of the person.
Sleeping poorly, being sick, having a bad day, or having a headache adds difficulty in hearing or seeing the repetitive stimuli and being able to process it without having a strong physical reaction of rejection, anger, fear, or danger.
How misophonia develops
I wasn’t always like this. My level of intensity when triggered has reached a high level because I was violently exposed to an everyday sound triggered by my neighbor. Before that, misophonia and misokinesia weren’t a huge part of my life. It happened from time to time but I didn’t think of myself as someone who has these two disorders.
But after a lot of exposure from my neighbor, misophonia and misokinesia have become a huge part of who I am and how I live.
When I encounter my worst triggers, my level of stress goes very high, my chest and my stomach are contracted, and my whole body is tight. My heart beats really fast. My brain tells me that I’m in danger and it’s important that the sounds or the movements stop right now.
What I feel is automatic, spontaneous.
I feel as if someone is throwing me against the wall again and again or as if someone is punching my head repeatedly. I can’t focus, I can’t think, I’m just in a state of surviving, of going through until the end of the trigger. And then, after that, I’m totally exhausted, having no energy at all.
When facing the lowest triggers, I will be annoyed and from time to time I’ll have some trouble staying focused. But it will not have a huge impact on me, my body, or my well-being. I will be able to carry on with my day. However, since my general tolerance to repetitive sounds and repetitive movements and also pain have decreased, it’s harder than years ago.
With triggers in the middle of my list, my body will contract. If I’m in a good state, I will be able to manage it. But if I slept poorly or had a migraine, for example, it will be more difficult for me and I will really want to put distance between me and the person or the machine making the sound and/or movement.
Is misophonia real?
Since there are not a lot of studies regarding misophonia and misokinesia and they are still mostly unknown, it’s difficult to really understand what’s happening in the brain and in the body.
But one thing is for certain: misophonia is real. Misokinesia is real.
If you talk to someone who lives with misophonia and/or misokinesia, no matter the intensity of the exposure, they are likely to say that they were not taken seriously, at least at first.
When I was searching for information about misophonia and misokinesia, I found Facebook groups, and in them, I found many people who were having difficulties having their feelings and their pain recognized as legitimate by their relatives.
Things not to say to someone with misophonia or misokinesia
“You’re too sensitive.” “You’re making such a fuss over nothing.” “I can do what I want, it is your problem.” “Just stop focusing on it.”
Because what we’re feeling and how our bodies are suffering during a crisis is not seen, because everything is invisible, it is not recognized.
People think that we control misophonia or that we can deal with it. People think that it is not a big deal. It’s not true.
My reality of misophonia and misokinesia is one reality. It’s the result of the different exposures I had in the past.
When I’m facing a crisis of misophonia and/or misokinesia, it’s like I’m not me anymore, but just a body that’s trying to survive (with the worst triggers), who’s trying to stay focused (with less intense triggers), or who’s trying to fully live in the moment (with low triggers).
Telling someone “it’s difficult for me because you’re making this repetitive noise” brings a lot of shame. This sentence can never fully describe and explain what this repetitive noise is doing to me. So I’m always like, “Am I really in that state only because of that?” What if they laugh at me? What if they use it against me? How can I tell others something that makes me so vulnerable? I am ashamed of my own reactions, even if they can’t be stopped.
I wish there was a button that I could just push and all of it would stop. I wish I could do whatever I want without the need to stop, to wait until the trigger is over so I can be 100% focused, and 100% myself.
But I can’t, because we can’t stop it. Misophonia happens on its own. It’s a disorder.
It’s not really possible to avoid all misokinesia and misophonia triggers, but if we could speak about what we’re going through without being mocked and misunderstood, and without shame, it would help a lot.
I feel alone because of people not believing me and acknowledging what I’m going through. I feel that I should deal with it by myself. And when I’m suffering during a crisis, feeling alone doesn’t help at all. It has a huge impact on mental health: loneliness, pain, exhaustion, despair… It’s a vicious circle.
People with misophonia and misokinesia are not lying or faking it. We are going through a real experience that we can’t control, that we can’t decide to stop. It’s hurting us and we wish so much to be able to enjoy things and live as everyone else does. Our situation is real. Our struggles and feelings are real.
Learn more: Tips for Coping with Misophonia and Misokinesia
More Neurodiversity & Autism Resources in The Ability Toolbox
- Comfortable Autism Noise Canceling Headphones and Earplugs
- Why the Autism Puzzle Piece Is Bad, and What to Use Instead
- Autism T-Shirts and Clothing to Celebrate Neurodiversity Acceptance
- Sensory Swings for Kids and Adults with Autism or ADHD: A Guide
- Sensory Overload Self-Help Guide: Coping Tips to Help You Thrive
Photo by Ketut Subiyanto
I have ankylosing spondilitis, anxiety, and a lot of determination! I am trying to find my way, my job and what I want to do with my life. I want to share about chronic disease, chronic pain. And also, I want to share awareness about misophonia and misokinesia. I live with these two conditions, it's really challenging.
Dr. Wilson graduated from Rosalind Franklin University of Medicine and Science and completed her residency in Internal Medicine at Advocate Good Shepherd Hospital in Barrington, IL. In addition to her private practice, she works as a science communicator, teaching health literacy in schools and online.