My Life with Misophonia: Part One
My name is Rebecca and misophonia has been a part of my life for over two decades. Today, I work with Hashir International Clinics and Research Institute as a patient support officer, providing additional sessions to anyone undertaking the CBT programme. In these sessions, we discuss how you are finding the therapy, and any challenges you might be facing. With my personal experience at hand, we work together to identify ways to move forward, towards calm and progress.
I like to describe my relationship with misophonia now, as ‘living alongside’ it. I don’t personally believe anyone can be cured of ‘misophonia’ as though it is a disease, but, we can learn tools and techniques that mean we don’t feel the negative effects of misophonia anywhere near as often. Reaching this place has been a long and bumpy road, one preluded by decades of anger, fear and ever-present stress. I’m writing this article to retread that bumpy road, to look back on how my life has been shaped by misophonia and eventually brought me to where I am today.
When I started to find the sounds of my family eating at dinnertime unbearable, I became a master of deception and timing. I would do anything to limit my time at the table, arriving at the very last minute having hoped that people had started eating already. I would eat quickly so I was chewing enough to distract myself from other sounds, but slowly enough that I wouldn’t risk finishing my plate before anyone else. Then as soon as I was done, the excuses would start; asking for more water or going to the bathroom – both trips taken at as slow a pace as possible. These tricks became second nature to me, part of an elaborate routine that I clung to whenever chewing sounds were nearby.
When any part of this routine wasn’t possible, or if I did manage to hear someone eating, a fire would start to burn inside me. A lump of outrage grew in my throat and I would lash out, yelling at siblings or snapping at someone to be quiet. The words would be out before I knew I was opening my mouth. Suddenly dinnertime was ruined, and I was left simmering in a pit of shame and anger.
Over the next few years, as I went through high school, my brain seemed to send out persistent tendrils, looking for new sounds, grabbing onto them as fresh triggers to torment my brain. Every sniff made by a classmate felt like an audacious insult. In those moments, I couldn’t fathom how no one else was also offended by these bodily sounds. My head occupied two opposing feelings; I knew that my reactions were something other than normal, that I ‘had’ something different happening. But at the same time, my outrage felt justified, like it was proportional to the horror of each sound.
When I was 13, my parents took me to see a child therapist. They were exhausted by attempting to keep my triggers minimal in a household of six, and worried by the daily torment that sounds caused me. I can’t imagine how it felt to see something invisible and implausible changing me into a constant wreck of stress. However well-intentioned this visit was though, at this point in 2004, there was little to no understanding of misophonia. I remember sitting across from a therapist while she emulated coughing and sniffing sounds, patiently asking me what did or didn’t cause me anger. She then tapped or hit objects around the room, questioning why those sounds didn’t make me stressed. We were both as confused as each other, and we left awkwardly, with no information or advice.
I coped by avoiding situations, leaning my head on my hands so that I could secretly hold a finger in my ear and eventually, wax earplugs. I remember standing in boots buying something else one day and stumbling across rows of packets of wax earplugs. They seemed impossible to me, too good to be true – a lifeline I didn’t know existed, especially not one so cheap and innocuous. I immediately bought six boxes – enough to last months of constant use. I would carry them around with me everywhere, always ready to warm the chunk of wax and roll it into a cone that I pressed deep into my ear. There, they became invisible behind my hair. I started to exist in my own muted, muffled world. It was bliss but also fraught with risk. I was terrified one would drop out of school and people would see. I constantly missed parts of conversations or someone talking to me. My head pulsed with earaches and headaches, and I woke each morning with my hair matted to the sticky lumps.
Wax earplugs became my constant accessory, and my triggers evolved further. Coughing, chewing gum and throat clearing were my worst nightmare and groups of people felt like torture. Train journeys, cinemas and exam rooms transformed into pressure cookers where I squeezed warm wax deeper into my ear and counted down each second until I could leave the ensemble of triggers that crowds of people became. Sharing rooms with friends at sleepovers or family on holiday created an obsession with making sure mp3 players had enough battery to fill my head with noise throughout the night.
These behaviours became my everyday routine, an obsessive collection of coping mechanisms that filled my days with fear. Fear that I would hear a sound, fear that I would be trapped in a noisy situation, or fear that someone would realise the lengths I went to every day, just to feel and appear ‘normal’.
While I was living at home with my family, I was free to let my stress and fear be visible. Not that this was easy on my family, or necessarily the best decision for me, but our guard is down when we are with family, much more than in social or professional situations. I hadn’t realised how much I would miss this before I went to university, and began living with others in shared accommodations and student houses.
Students are noisy. This will come as no surprise to anyone, but for someone with misophonia, I was taken aback daily by the new volumes that filled my life. There were now thin walls of student halls, parties with loud music that vibrated floors and muffled voices talking deep into the early hours. I wasn’t afforded the same familial openness as I was at home – I couldn’t snap at my roommate in the same way I had snapped at my brothers. Suddenly my social interactions came with jeopardy – fail to keep calm and I could be quickly exposed as someone with no patience or manners.
Headphones were my crutch, and my phone now held music that could pump through noise-cancelling earbuds while I studied or slept. I discovered white noise apps and videos on loop, that could flow static sounding calm into my head for hours. I survived like this through friendships and my first serious relationships. Saying I was a light sleeper seemed to avoid suspicion from anyone I shared the bed with, and I would wake up in a tangle of headphone wires that I secretly wrapped away under my pillow come morning.
My avoidance behaviours became a framework which I applied to every situation. Holidays for me meant extra headphones in case one broke, extra earplugs and a headband to wear at night to stop them from falling out. I wonder sometimes how much money I have spent on the multiple sets over years of carrying them around like a security blanket. While misophonia kept a vice-like grip on my life, I graduated, moved house, dropped friendships and met partners. I travelled, had my heart broken and got my dream job, all with earplugs in my pocket and a sense of dread that the next sound I heard would be a sniff or cough.
When I was 25 and living in London, I met the man who is now my husband. We met at work where I was a television researcher, and I would take off my noise-cancelling headphones to talk to him. We would ride the underground into the office together sharing earbuds while I pressed my hand against my empty ear. Over the first months of our relationship, I knew this was the person I would spend my life with and therefore, it was time to tell him about this huge, noisy part of my life.
To be continued. Part two explores how I discovered this ‘feeling’ had a name, and how misophonia has shaped my marriage and desire to start a family.