Misophonia Story TomThis 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?

London, England

What do you do for a living?

Copywriter, digital marketer, web designer

What are you passionate about / what are your hobbies?

Travelling and Street Photography

How old were you when you first realised you had an issue with certain sounds?

Definitely from the age of 9 or 10, but possibly as early as 5. There was an incident with carrots.

When did you first find out it was called misophonia?

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!”

I bounced around the room and flapped with excitement for a while, then sat down and stayed up all night researching it.

What are your 3 biggest triggers?

Crunching, rustling, coughing.

Do you have any 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 – 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 my phone GPS or some kind of map I get lost and can end up circling familiar streets for hours trying to get back on track. I’ve had this ever since I was a child (before the days of mobile phones and GPS) and friends always had to draw me maps or come 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 to focus on mapping and remember a route.

4. Seeing or talking about blood makes me feel faint. It was so bad that as a child that I once passed out and vomited during a blood test. 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, so it’s seems I’m somehow able to distinguish between fake violence and the real thing.

Have you told other people about your misophonia and if so what was their reaction?

I created this website, but the answer is hardly anyone actually. 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 Disorder 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 the hosts accidentally set off their burglar alarm. I went absolutely berserk and ran around the house with my hands on my ears asking people why on earth they weren’t panicking. My friend Richie found the whole thing hilarious and collapsed with laughter. Weirdly this helped.

There were a multitude 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 “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 even 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 it’s myriad of triggers, a doddle.

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?

Acceptance.

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 on you instead, misophonia will stop ruling you. It’ll just become 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:

Cainama, Venezuela
Nyiragongo, Democratic Republic of Congo

Favourite song:

Sky Children – Kaleidoscope

Favourite book:

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!

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