My advice for friends, family, and partners of sufferers
Written by Rebecca – Patient Support Officer with Hashir International
Misophonia has been a part of my life for over two decades. At around eleven years old, I started to feel angered by the sounds of my family eating while we sat at the dinner table. My family weren’t loud eaters but to say it felt like I could hear every detail of their chewing is an understatement. Each noise made by their food or mouths was amplified to a deafening level inside my head, building into a rage that I couldn’t contain.
In the years that followed, this feeling which we now know as misophonia, spread to multiple other noises that caused me daily stress, anxiety, and fear. My triggers began as chewing but evolved to include loud breathing, sniffing, coughing, other people’s music and even just the sound of certain people’s voices.
While I was trapped inside the anger that my misophonia created, I can only imagine how it felt for those sitting next to me. My siblings watched me transform into a pressure cooker of stress while my parents felt helpless, trying their best to summon patience for something so destructive and difficult to understand. Many social situations felt impossible to endure and it was easier to alienate myself from some friendships than explain why I couldn’t bear being near them at lunch, for example.
Now, twenty years later I am in a very different place. Misophonia was a constant companion in my teenage years and throughout my twenties. Then two years ago I started a programme of CBT specifically for misophonia with Hashir International, and it has significantly changed my life for the better. With the tools CBT has taught me, my misophonia is completely manageable. I am finally experiencing the life that I would see other people enjoying and wonder – how do you not hear that? How is that sound not making you blind with rage? Most days are free from that rage – some are still challenging, but I am in a much calmer, quieter place than I imagined possible.
Perhaps you are reading as someone else with misophonia, or maybe you often watch this improbable rage boil over in someone you love and care for. Either way, I’m hoping I can offer some help navigating the rough seas that misophonia creates. This is my advice for anyone with a loved one currently drowning in a sea of sound and stress.
Firstly – you are off to a great start. The very fact that you are here reading this article, having set out searching for advice shows you want to support and understand what is happening to someone you care for. Don’t underestimate what a big step this is, and how seen and respected it will make someone with misophonia feel.
Seeing and believing. Individuals with Misophonia are aware of how out of proportion their reactions to certain sounds seem to other people. This causes feelings of shame which can be a huge roadblock in seeking help and support. Believing them and telling them so is a simple but important lifeline to offer. This can be as easy as saying ‘yes – I know that noise is triggering for you’ instead of when your (understandable) knee-jerk reaction might be saying ‘it’s not that loud’.
Talking about it – at the right time. Unless you are a Buddhist monk, you know how it feels when anger temporarily clouds your judgement. Maybe when someone drives badly on the road, the 100th thing goes wrong at work, or when a stranger is rude to you for no reason. When the rage descends, rational thinking can go out of the window and you need to take time before speaking. Misophonia is the same. Talking about it is important, but when there is a trigger still present, or in the furious minutes just after an outburst at a sound, a constructive conversation is unlikely to be possible.
When it is the right time – be curious. Ask questions about what specifically they find triggering. It might be hard for them to describe or feel embarrassing at first, but it’s an important part of acknowledging how their misophonia starts. Listen closely and let them know you hear them. It might not be the right time to act based on what they’re saying – but just sitting with understanding is crucial. Be by their side and on their side.
If they choose therapy – talk about it and be there when needed. There are now different types of therapy available for the treatment of misophonia. I can only speak from my personal experience, so I won’t go into who therapy is or isn’t right for. However, if that is something they decide to pursue then helping them commit to the process and supporting them throughout is important. It’s like undertaking a large project that requires consistent effort and often, teamwork. Communicate throughout, discuss ‘homework’ they may have between sessions and let them know you are along for the ride.
The hard truth about ‘fixes’. When misophonia is having a huge impact on someone’s life and therefore the lives of those around them, it is tempting to apply quick fixes wherever possible. This is completely understandable and comes from the good intentions we have when loved ones are hurting. But some fixes can turn into avoidance of the actual problem, and in the long term can reinforce the reactions of fear and anger that misophonia produces. For example, I spent years of my life wearing earplugs or headphones, blocking out all possible noises which over time, heightened my reaction to trigger sounds in the moments I did hear them. Earplugs were only a surface-level solution to something that needed deeper help – for me that deeper help was therapy. This is all to say you may find a fix which gives someone with misophonia peace. It might allow the family to eat together or make essential situations such as public transport bearable. Let the fix be a tool they can reach for without embarrassment but stay aware that using it is not treating the long-term problem.
Look after yourself! It is exhausting to witness the impact of misophonia and feel the stress it adds to your loved ones’ life. I believe one of the most important things you can do is to build up your mental well-being, so you can be present for a struggling misophonia sufferer. When we are run down or anxious, it is much harder to bring patience to a volatile situation. Find what you need to encourage calm and rest in your life, whether that is a creative outlet, team sports, fresh air or meditation – it can be anything that feels like taking a big deep breath.
I am so lucky to have finally reached a place of understanding and calm and to have enjoyed some freeing conversations about my misophonia over the years. In addition to my own work in therapy, I have the patience and support of my husband, friends, and family to thank for how I live alongside my misophonia today. It goes without saying that everyone’s experience with misophonia will be unique and influenced by many different and deeply personal factors. Nevertheless, I hope these suggestions are helpful, even in the difficult moments that misophonia creates.