This is the #3 edition of our My Misophonia Story series. This week features me, Tom (34) from the UK. Each week we’ll feature a new reader story, so if you’d like to share yours, please drop us a line. Without further ado, here’s my story…
Where are you from?
What do you do for a living?
What are you passionate about / what are your hobbies?
Photography, writing, travel.
How old were you when you first realised you had an issue with certain sounds?
Definitely from the age of 11, but possibly as early as 5 (remember there being an incident with carrots).
When did you first find out it was called misophonia?
It was 2014. I was reading about synaesthesia (a different sensory disorder) and a passage about misophonia popped up. I thought “THIS IS ME, THIS IS A THING!”, bounced around the room with excitement for a while, then spent all night researching it.
What are your 3 biggest triggers?
Crunching (especially apples), rustling and coughing.
Do you have any other sensory quirks?
I have a few other sensory quirks.
1. ASMR (autonomous sensory meridian response). This is triggered by specific sounds and visuals – certain voices for example. It’s a pleasant fuzzy sensation that washes through you and makes you head and skin tingle. Someone described it like “tiny bubbles exploding in your head” and that’s pretty much spot on. I used to get this more as a child, but it still triggers for me given the right set of circumstances.
2. Misokinesia. This is an aversion to certain visual stimuli – particularly movement in the peripheral vision like face touching and fidgeting. I feel strongly that this comes under the wider Sensory Processing Disorder umbrella and that future studies will confirm this.
3. I have zero sense of direction. Without Google Maps I can end up circling familiar streets for hours. I’ve had this ever since I was a child (before smartphones came along) and friends always had to draw me maps or come and meet me. I have no idea whether this is a form of dyscalculia, a severe lack of grid cells, or simply because my brain’s too busy trying to process all the sensory data that neurotypicals seem to be able to filter out to focus on mapping.
4. Seeing or talking about blood makes me feel faint. I believe (after some frantic Googling) that this has something to do with an overreaction of the vagus nerve in the parasympathetic nervous system. Apparently this affects approximately 4% of the population. Even listening to a heart beating makes me feel strange. Bizarrely, I love horror movies.
Have you told other people about your misophonia and if so what was their reaction?
I created this website, but hardly anyone in my day to day life knows. I don’t want people to be on edge around me. However, I have told a handful of people who I thought might find it interesting.
One thing that I’ve found helps, is talking about sensory processing first (rather than starting out with misophonia). Everyone knows and understands that we have different senses (sight, hearing etc) and it’s easier for people to get their heads round the idea that this processing of this information can go awry. Ultimately it’s all just information and how it’s processed. We just happen to be ultra sensitive to certain sensory information.
What’s your funniest/most ridiculous misophonia-related moment?
I was at a house party when someone accidentally set off their burglar alarm. I went berserk. I ran around the house with my hands over my ears screeching at people to make it stop and contemplated walking 20 miles to get home. They fixed it. My friend found the whole thing hilarious and rolled around on the floor laughing. Weirdly this helped!
There were a lot of ridiculous situations at home around the dinner table when I was growing up. Rather than tell people that I was about to spontaneously combust (because I couldn’t cope with chewing sounds or cutlery clatter) I would come up with bizarre reasons for my deathly facial expressions: “I thought I just saw someone go past our window” or “sorry, I accidentally poked myself in the eye”.
What helps you to cope with your misophonia?
1. Learning about all this stuff, particularly the brain – and the amygdala. Being conscious of the neurological and physiological processes that occur during an episode can massively help reframe the negative emotions. I’d go so far as to say that questioning the nature of these negative emotions in the first place really helps.
2. Putting on background noise during meals. My partner and I often eat with the TV or background music on. This helps numb/confuse/quieten the triggers significantly.
3. Having an escape route! If it’s all too much, I just leave the room temporarily. Don’t be a hero. Saying you need to go to the bathroom and nipping out for a few minutes is the easiest thing in the world. It’s quick, it doesn’t offend anyone and gives you instant relief.
4. De-stress. This is key. Stress makes misophonia a hundred times worse, so be in tune with your stress levels, realise this will affect your sound tolerance and adapt accordingly. There are lots of things you can do to lower your stress levels. I find sleep, gardening and long walks help.
5. Earphones. These make public transport, with its myriad of triggers, much easier.
What are you misophonic superpowers?
I notice everything.
I do a lot of street photography and I think my misophonia (and misokinesia) makes me spot little things, which in turn helps me get some interesting shots.
In general I think this unique way of gathering and processing of sensory information gives all of us a slightly different take on things creatively.
My experiences with my misophonia (and the emotion, confusion and anxiety which can surround it at times) also helps me empathise with friends and family going through emotional stress or mental health issues.
What’s the single most useful piece of misophonia related advice you’ve learnt?
What’s your very best life hack?
If you want to nail a high five, lock your gaze on the other person’s elbow (rather than their hand). Works every time.
Is there anything else you’d like to share with your fellow misophones?
You’re not alone.
Try to put yourself in other people’s shoes. Every single person you meet has a world in their head that’s as important and exciting and terrifying and wonderful and frustrating as yours. The sounds we notice and pick up as misophones are not unusual, they’re normal and the people making them aren’t doing anything wrong. We just have a heightened sensitivity to them.
If you can get your head round the fact that the people making trigger sounds are not the enemy, and focus instead on what is in your control, misophonia will stop ruling you. It becomes something you have and that you work with, rather than something that owns you.
And finally! The quick fire round…
Favourite place you’ve visited:
Mount Nyiragongo, Democratic Republic of Congo
Sky Children – Kaleidoscope
My Traitor’s Heart – Rian Malan
Favourite work of art:
Charity – Paul Russell
5 things you couldn’t live without:
1. Festivals 2. Music 3. Books 4. Travelling 5. My partner!
Thank you for sharing your story. I’m glad to know I’m not alone. I look forward to hearing more stories.
Thanks Tory! Lots more stories to come.
I have suffered from this for years. It ruined my 9 year relationship with my boyfriend who I willed with.
Thanks tom, as they say, ‘every little helps!’
Helps to know there are ‘normal’ people out there… lol 😉