My Life with Misophonia: Part Two
This is the second part of an article exploring my personal experience growing up with misophonia. If you haven’t already, please read part one, here.
By now, I had realised it had a name; misophonia. One evening feeling defeated by a noise, I opened Google and an experiment in search terms ‘I hate noises’ and ‘people eating/chewing makes me angry’ led me to an article and a label. Misophonia. I remember thinking I had heard characters overdramatically saying in movies “it meant so much to know I’m not the only one” and thought it was a platitude. But that’s exactly how it felt, suddenly for the first time I felt seen heard and validated all at once. It wasn’t just me, it wasn’t only my brain or my impatience or intolerance. I read comments for hours of others comparing experiences. It felt like a huge shift and gave me the confidence to talk to others about what had previously been an intangible, indescribable feeling.
So this is how I found myself sitting across from someone I love, telling them how a sniff can send me spiralling into a deep rage. He listened, asking questions that didn’t make me feel like some kind of monster, and wondered if there was something in his behaviour that he could adjust to make my life easier. I burst into tears and let his kindness sink in. When someone so calmly listens to a confession you have invested years of your life hiding, it feels monumental. We talked about how it had shaped my life, how I cope and what he can do when I am triggered by a noise in his company. Over the following years, he would witness all forms of my misophonia. He endured long train journeys without being able to have conversations with me. Had sleepless nights interrupted by my pacing as my headphones struggled to block out the sounds of a neighbour’s party. He understood why we had to urgently move tables in restaurants or book cinema showings at strange times when I’d hope for a smaller audience. He approached each thorny, tense situation with kindness and composure. He would hold my hand or pass me my headphones and tell me, “It’s going to be okay. I’m by your side and on your side”.
Life at this point was a balancing act of noise. My days were filled with the joy of good friends, adventurous travel, fulfilling work and a solid life partner. But peppered in between the snapshots of happy, calm life were moments of pure stress. We lived in New York City temporarily and the complete absence of neighbourhood noise regulations transformed my nights into an onslaught of triggers. The shared office where I worked caused precarious conversations about noise levels. How could I explain to my bosses that my brain was overflowing with rage at colleagues’ gum-chewing and chatting, without appearing to be completely unreasonable? When neighbourhood parties created persistent bass thuds, I would drag pillows and blankets into the bathroom. Here, as far from shared living room walls as possible, I would curl into a sobbing wreck, exhausting myself to sleep.
Eventually, we returned to the UK and accidentally collided our return with the arrival of covid-19. The lockdown was a double-edged sword for me. Suddenly there was no need to be in an office or crowded train with other people. However, I had never spent so much time in my own home, becoming finely attuned to the different sounds rattling around my walls and below my floors. Our central London flat shook with the music of street parties and celebrations no longer held in nightclubs. We planned our departure from city life and found a cottage in the countryside near Manchester. Like many others, we were moving out of the city, but our reasons were tangled up in a complex web of reasons that other people couldn’t imagine.
It was in this countryside cottage, that I found temporary quiet. The next-door neighbours were now open fields. I didn’t hear sirens or other people’s music for months. I worked in silence scattered with the occasional passing car, or the wind hitting the windows. But something wasn’t peaceful. I could ‘feel’ my misophonia ready to be triggered by something. Despite the quiet, I was still wearing headphones and earplugs, and I would feel a rising fear if they weren’t close to my hand. Gradually, my misophonia latched onto the repetitive sound of a nearby security bollard that would rise and lower throughout the day. The mechanical sound of its hydraulics sent the same flush of rage that previously, it would take a sniff to trigger. I sealed off my hearing from it as much as I could – closing doors and windows, and wearing headphones without a break throughout the day while I worked from home. This became my new normal.
My normal, or what I expected to continue being my normal was suddenly interrupted by happy and life-changing news in July of 2021. I was pregnant with our first child, due in April of the following year. Amid the excitement and sickness and all the other emotions that arrive with a positive test, a unique thought was lurking. “How will this affect my misophonia, and how will my misophonia affect my baby?” I found myself imagining scenarios where a noise made by my child became a trigger, or dreading hospital visits for their crowded waiting rooms of coughing people. Misophonia had the power to transform happy anticipation into a minefield of triggering situations. I turned these thoughts over and over in my head and spilt my feelings out to my husband in floods of tears.
As my belly grew, I know it was time to act.
So here I am today having completed a programme of CBT, finishing when my baby daughter was a few months old. In a very simplified summary of what is a complex programme, CBT has allowed me to retrain and calm my brain’s reactions to misophonia triggers. Now the sounds which would previously affect me hourly, I may notice weekly, or some even just monthly. I will be writing in detail specifically about my experience of the CBT programme in another piece soon.
For years, I accepted that misophonia had power over my life, my choices and even my most important relationships. Looking back, I find it hard to realise that it took these extreme lengths of anguish and stress, even the imminent arrival of a child to get me to a point where I wanted to act. I could have searched for therapy years and years before, but this was the road that brought me to that point. If it meant I got to where I am today because I took that road, then I wouldn’t change a thing.