Therapy for Misophonia: My Experience

Therapy for Misophonia: My Experience

Therapy for Misophonia: My Experience

My name is Rebecca and misophonia has been a part of my life for over two decades. You may have read my previous articles about how my childhood was shaped and influenced by misophonia, or you may be on the verge of starting CBT for your own misophonia. Either way, I’m going to be describing my own personal experience of completing a programme of CBT – Cognitive Behavioural Therapy, specifically for the treatment of misophonia with the Hashir Institute.

If you’d like to read about my life with misophonia before therapy, you can read my previous articles here.

My misophonia started when I was eleven and by the time I was thirty, I had built an elaborate shield of coping mechanisms around myself.  I wore earplugs to sleep at night, and noise-cancelling headphones throughout the day. Any moments of silence were filled by the sound of the radio constantly on. Travelling meant fully charged pairs, and carrying spare pairs of headphones and eating in restaurants involved a ritual of choosing the right seats, far enough away from other people. My triggers had evolved from bodily sounds like chewing and sniffing, to repetitive mechanical sounds and other people’s music.

In the summer of 2021, I found out I was expecting our first child. This became a catalyst for me to seek treatment, and some research took me to find the Hashir Institute’s website. I was familiar with increasing awareness of misophonia, especially in online communities. But I had no idea there was now therapy available specifically for those with misophonia. I emailed Hashir about my interest and described the impact of misophonia on my life, I remember realising this was the first time I had ever written down how it felt. I quickly typed out all the ways I could be triggered, all the steps I took daily to avoid certain noises and how long this had been part of my ‘normal’ life. This was my first time – in a tiny way – experiencing the power of therapy – putting my experience out there to an impartial, neutral person.

I’m not going to sugarcoat how the decision to start therapy went for me. I received a reply from Hashir describing the process, the timeline and what to expect through the months-long CBT programme. But while it all sounded encouraging, something in me couldn’t imagine how it could make a dent in the shield I had spent years building. It was a big financial investment too, and I turned it over in my head for weeks, rereading the email. Surely I could just carry on how I was, with my routines, headphones and acceptance that some things in life just weren’t possible for me. I tried to convince myself I would be fine never having the windows and doors ajar in my house during the summer, or going to the cinema, or chatting with a travel companion instead of closing myself off from the world.

Eventually, of course – the realisation that the life I was maintaining was not sustainable, enjoyable or healthy – dawned on me. I wanted to be the healthiest, happiest version of myself – especially with a baby on the way and all the new challenges that would bring. I reached out to Hashir again, explained my delay and asked when we could start. I moved money from my savings and knew I would be putting my all into the process. I decided to commit to this therapy with optimism and dedication – it was only for the benefit of my entire life, after all.

I had never tried therapy over video call before, but I found the privacy freeing. I could talk about my most personal and sometimes absurd-sounding thoughts with a professional, but still be in my own home, with a cup of tea nearby and space to reflect afterwards. Despite this, the first sessions could be emotionally draining. My conversations felt like a huge can of worms. Each detail about misophonia started another thought about my life, triggers and relationships that connected to each other. How on earth could we ever make sense of this mass of information that was all related to my misophonia?

But as Hashir described the long-term process to me, it turned into a solid plan of progress and work. There were clear checkpoints to reach, communicating with Hashir each step of the way and recording progress in charts and across multiple conversations.  Each session wasn’t just spoken out loud for nothing. They all had tasks that scaled up week by week. My progress could be constantly moving forward, as long as I tried my best with that week’s undertaking. I felt equipped to start – I added the sessions to my calendar and did the very important ‘new project’ task of buying a fresh notebook. I was ready.

A pivotal point of my CBT was the introduction of SEL, which is an acronym for STOP, EXPOSE, LEARN. To explain this as clearly as possible, it is the process of stopping avoidance of a sound, letting myself hear the noise, and learning from that situation.  The part which was so eye-opening for me was realising just how much avoidance I had made part of my everyday life. I was keeping windows and doors closed in case I heard a noise from outside. I was putting on music or podcasts not for enjoyment, but to add cover noises over possible triggers. I was wearing headphones even when I left my desk to go to the kitchen to make a cup of tea. Hashir explained that every time I did any of these avoidance behaviours, it was reinforcing the negative emotions caused by the triggers. It was such a simple, but huge breakthrough for me to think of it that way. If we respond to something a certain way every day over and over, of course, our brains will reach for that behaviour unprompted. I was learning more and more about how my own brain functioned, but this wasn’t just a classroom, there was also homework.

This ‘homework’ sounded impossible at first: I needed to gradually stop all my avoidance behaviours, one by one. The list of different actions was long, and as I headed into my first week of not adding the sound of the radio to my mornings, I felt like my ears were on high alert for any slight sound. And they heard it. Everything. I felt like I was hyper-aware of everything and tried my best to follow the advice Hashir had given. I was to remember that all exposure improves tolerance, and to also ‘rate’ my experience of how difficult I found it. This would then be compared to a rating that I had predicted before. By my next session, I had let myself be exposed to sounds, without avoiding them on a daily basis. When we compared how difficult I thought it would be, to how it turned out, not avoiding noises felt nowhere near as hard as I’d predicted.  Instead, it felt like progress.

The next stage, by now about 6 sessions into the CBT programme, was KKIS. Another acronym which would become a long-term tool in my misophonia management. In short, KKIS is the process of realising you are being triggered by a sound, staying in the situation instead of leaving, identifying the thoughts that the sound is prompting in your head, and then substituting those thoughts for new ones.  I won’t go into the complex and deeply studied science behind why this is an effective tool for misophonia – but honestly to say this was life-changing for me, would be an understatement. Through Hashir’s guidance and weeks of practice, KKIS has changed how my brain reacts to trigger sounds. At first, this was a manual process, and I guided my brain through the steps of KKIS methodically. I would use my notebook to write down each one, recording each thought that popped up automatically when I heard a sound – and then writing down a new, positive and relevant substitution to replace the rage-fuelled original one. After weeks, even months of this, my brain adopted the positive thoughts as a go-to, instead of the negative ones. It still needs guidance and reminders every few weeks, but incredibly, it has changed the way my brain responds to noise.

Over the next few months, I continued to feel an amazing change in how my mind responded to noises. My sessions became further apart, and by the time I had my last sessions, I had stopped all of my avoidance behaviours. I had stopped doing them gradually, and the exposure to sounds that this allowed had been quietly increasing my tolerance, almost without me realising it.  It hadn’t been a completely easy journey of course – there were points where I had either become extremely stressed and angry and upset, or times when I had just reached for headphones instead of letting myself be exposed at all.  But more often than not I had pushed on through, and I was now feeling significantly different about my misophonia.

By the end of my therapy, I felt like my misophonia was a manageable condition. I had never felt this way in my life. I wasn’t cured – and I hadn’t expected to be. But instead, I had learnt tools that I could use in moments of high stress. In addition to this, while I had been learning these tools over weeks and months, practising them had given me a solid foundation of exposure that increased my tolerance.  My headphones were rarely used and my windows were open. I listened to music for fun, rather than as a stress-fed tool. I enjoyed breakfasts and lunches calmly. Importantly, when I did notice that I was reaching for my avoidance behaviours or focusing on sounds – I could turn to my KKIS diary and write down the process that would bring calm into my head once more.

Today, over a year after finishing CBT, the calmness has continued. There have been challenging days of course, but I have noticed that my misophonia only really surfaces when I am particularly run down, feeling more anxious or in need of a rest. My therapy with Hashir International has been so significant in fact, that I now work for them, providing peer support sessions to those also going through the CBT programme.  If CBT with Hashir International is something you are considering, perhaps we’ll talk on a Zoom call someday!

Thank you for reading about my experience with therapy for Misophonia. I am very fortunate to be able to afford the cost and time that was needed for such an undertaking. CBT may not be right for everyone, so I hope you found learning about my personal perspective helpful.

For Hearing Healthcare Professionals