The Impact of Sounds

In my experience, it’s been pretty tough to find the right words to explain what it feels like to have misophonia – and I’m not just talking about my usual struggle with word retrieval and articulation. Thanks to ADHD, I’m always wrestling with finding words. But seriously, it’s hard to describe what it’s like living every day in fear of being triggered and constantly adjusting your life to avoid said triggers that, most of the time, you have no control over.

When I've tried to explain misophonia, some of the responses I've received are...

• "Oh yeah, that’s a really annoying noise, I hate that too."

• "Yeah, I get overstimulated in busy places too."

• "Can’t you just block it out?"

• "Why not just put on some music or the TV to drown it out?"

• "You’re SO intolerant."

• "Have you tried earplugs?"

• "Really? I don’t even notice that sound."

• "Are you just overly sensitive?"

Or, one of the worst responses...

• "Oh, what? This noise is annoying?" Rapidly triggers because they think it’s hilarious.

Don't get me wrong, I've also received responses marked by both support and genuine curiosity for the condition and I’ve found for the most part, people are curious about what misophonia is, what it feels like and how it affects my life. So, allow me to answer these burning questions for you.

What is Misophonia?

I’ll keep it short and sweet:

Misophonia is a disorder characterised by a decreased tolerance to specific sounds (or visuals), referred to as triggers, such as chewing or breathing. Triggers lead to strong negative emotional, psychological, and physical reactions. These reactions can include distress, irritation, anxiety, or rage, and the response is often disproportionate to the sound itself. Although misophonia has been recognised in various fields like audiology, neuroscience, and psychology, there is still no universal definition, which has made it difficult to conduct consistent research or develop standardised treatments. Consensus Definition of Misophonia [2022]

How does it affect your life?

You may have read my earlier post about finding the perfect pair of earphones, so you’ll know that most of us with misophonia tend to have earphones or earplugs with us pretty much all the time. There are so many ways that misophonia (and, let's not forget, misokinesia) can impact our lives, and everyone has different ways it impacts their life.

Let me give you a few personal examples:

• When I’m booking a table at a restaurant, I’ll request one far away from others, or if I know the place well, I’ll already know exactly which table I want and ask for that one. Same goes for cinemas, public transport, meetings, theatres – basically anywhere I’m seated around people. I can’t count how many times I’ve had to move seats in public, sometimes once, twice, even three times.

• There are certain spots I’ll just avoid altogether because I know I won’t be able to escape certain triggers.

• We used to have a neighbour who played an instrument every day, and I had to make sure I wasn’t home, or I’d leave the house whenever he played.

• In the past, I’ve eaten alone, away from others, just to avoid triggering myself.

• I’ll always choose the quietest work environment I can, even if that means being a bit more isolated.

• I’ve actively steered clear of certain people who trigger me, and even had to fib to get out of situations without making them feel bad.

• I’ve had to ask loved ones to change their habits or hobbies, including not having certain things in the house.

• I’ve avoided songs, movies, shows, etc., because they contain triggers.

• I once worked with a lovely guy who kept clicking his pen without realising. He even removed the tops from his pens so he’d remember to stop. What a legend!

• Unfortunately, it doesn’t just affect the person with misophonia but can severely affect the people closest to them. I have many loved ones who won’t do certain things because they know it will trigger me. I’ll regularly give my loved ones "the look" or ask them to stop doing things like leg jiggling, repetitive tapping, or picking their nails – to the point where I feel like a nag, but I can’t help it. I often feel like a burden, constantly asking people to stop triggering behaviours. I feel like I’m being way too demanding, even though I’m just trying to survive.

• One of the biggest impacts is the way it feels and the reactions it evokes.

The list goes on, and it’s different for every person who lives with misophonia.

What does it feel like?

People with misophonia often struggle with feelings of guilt, isolation, and frustration, and there's this constant sense of being misunderstood. I have also described having misophonia as:

• Overwhelming

• Exhausting

• Debilitating

• Anxiety-inducing

• Intense

• Disorienting

• Infuriating

• Invasive

• Uncontrollable

• Draining

• Stressful

• Unbearable

The self-blame can be immense, constantly feeling like you're "the difficult one" or "the odd one out," which can lead to a whole lot of shame. Even though I know it’s not my fault, it’s the way my brain is, I often feel guilty for not being able to tolerate certain sounds or visuals. The stress of being surrounded by triggers can rapidly heighten anxiety and anger, and at times, it all just becomes too much. The overwhelming nature of misophonia can lead to breakdowns or leave me feeling completely drained.

Living with misophonia means you're constantly on the lookout for triggers and trying to figure out how to adapt and enjoy life. It’s not just about the sounds or visuals – it’s about the uncontrollable responses they induce and the toll they take on your mental space. Finding that balance between protecting your well-being and not coming across as demanding can feel like a full-time job. It’s a daily struggle, but it’s important to remember that we’re not alone in this, and it’s perfectly okay to set boundaries and ask for what we need. We all have our own ways of coping. Misophonia can be hard for others to fully grasp, but that doesn’t make it any less real. One day, hopefully soon, there will be more awareness and understanding of this debilitating condition, but for now I’m just out here dodging triggers, moving seats, and finding ways to keep my sanity intact!