Day in and day out I hear people talk about misophonia being a rage disorder. Sure, when we’re overwhelmed we can become angry – but like a toddler having a tantrum (with no reprieve or means to fix the situation), anger is merely just one of the numerous symptoms. More often than not, misophonia can cause sheer devastation. It’s not easy feeling like we’re always the bad guy, and it’s certainly not easy feeling like the world is attacking us.
Misophonia is hard on relationships. It’s hard on social outings (if you even bother anymore) and it can make everyday situations like work, school, or even going to the supermarket unbearable. There are few spaces that are truly safe for misophonia sufferers. For me, I have become nocturnal and forego most social events. I rarely attend family dinners. I don’t go to restaurants. I’m scared to make new friends or even date because ‘the conversation’ is going to come up. Even as an advocate for this disorder, I often feel trapped and confined within its walls. The truth is – misophonia is far more than just “sounds” and rage”.
There are few aspects of my life (aka none) that misophonia has not touched. I had to switch from a brick and mortar university to online because of it. I can’t even play the exercise game on my Xbox Kinect without the sound off because there is whistling and cheering. I ended up crying in tears (moments before writing this hate-fuelled article) because, guess what? Whistling on television. I also have visual triggers – some of those being shortened words “u” “r” and double spaces after periods. Online games that I used to love have become impossible because of text speak – some books and readings are too hard for me to handle. I also have had to give up games because of whistling, or visual effects. I gave up MMOS (which helped me through heavy periods of depression as a teenager) because the other players were running and jumping too much, and their spells were triggers.
Many of these things I would be fine to live without on their own. Put together, misophonia is a struggle that takes over our lives and deteriorates the little things. As the severity of the disorder grows, the amount of things we have to give up can become hard to handle. It’s easy to see why people with misophonia can become depressed. For me, I am forced to realize that until there is a treatment (there’s great research going on) my life is going to be different than I imagined. That’s tough. That’s really hard to come to terms with.
Some days I cry. A lot. Some days, I barely make it through. Sometimes I’m completely nocturnal because I don’t know how else I can get by. That’s okay. It’s completely alright to not be alright – but it’s hard. I hope you know that even as I try to act positive as an advocate, I’m here in the trenches with you. I’m struggling too. I’m here crying, pulling at my hair, clawing at my arms with my nails because I am so overwhelmed. I’m having over-responsive tantrums. I’m screaming at people even when I shouldn’t (and apologizing afterwards).
I’m really tired of being the bad guy. I’m tired of being misophonia’s prisoner. But, I’m not sure what else I can do besides advocate. Some days are just going to suck – but, at least I know, and you know now too – we’re not alone in our suffering.
This is why I wrote Full of Sound and Fury: Suffering With Misophonia – I wrote my book because I didn’t want people to be alone. You’re not.