This is the #11 edition of our new My Misophonia Story series. This week features Susie (45) 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. Susie, take it away…
Where are you from?
What do you do for a living?
Administration and receptionist.
What are you passionate about / what are your hobbies?
My patient husband and 4 amazing children. My new home and designing the garden.
How old were you when you first realised you had an issue with certain sounds?
About 14 – travelling long distance in the car on a family holiday was tortuous! I refused to go into the restaurant for lunch as seeing others (my mother in particular) eat was just unbearable! I preferred to go hungry. From then on I was very aware of the the other sounds that I strongly reacted to.
When did you first find out it was called misophonia?
2 years ago – after a search for answers on websites.
What are your 3 biggest triggers?
Stress, anxiety and tiredness are triggers.
Forks scratching on dinner plates – all metal cutlery is bad but forks – even seeing forks – makes me feel like my whole body has been stung by a bee – I feel extremely hot and sweaty and panicky- which makes me very tearful – it’s so frustrating!! I’m love my family and want to eat with them but at times I can’t.
Deep gravelly voices – I have to turn the radio off a lot when certain newsreaders are presenting.
People shuffling their feet – just not lifting their feet properly when they walk and dragging their shoes – I can hear them in the next shopping aisle!!!
Do you have any other sensory quirks?
Yes, visual – People with long fringes in their eyes is infuriating – I have to hold myself back from being rude and suggesting they cut their hair. Seeing people chew food and pop gum. (Not just the sound of it).
Touch – I can’t touch cotton wool or wire Brillo cleaning pads, or chalk – or wear woolly jumpers. I have very sensitive skin and the seam on socks is almost painful.
Numerous sounds – My colleague wearing bangles and hitting the edge of the desk every second she types is making me consider resigning. To me the sound is so amplified and repetitive – everyone else is oblivious to it.
Other people’s conversations in restaurants!! To me it’s amplified and the “s”‘ sounds and low whispering sounds stand out and I eat quickly and leave.
Colleagues clicking their pens.
Colleagues scrapping their lunch bowls!
People crackling water bottles as they drink.
The noise of sweets being unwrapped.
Turning the pages of a newspaper!
When people mispronounce words I have to repeat the word to myself several times correctly – unless I feel brave enough to correct them. It’s such an intense feeling of near rage.
Long nails tapping keyboard.
When people jangle their keys and the loose change in their pockets!
The movement of people’s jaws is distracting:
Foot tapping / leg shaking
People blinking their eyes is distracting (news readers in particular).
I can hear a car coming down the road before anyone else can hear it – I feel the vibration of the car before I hear the car and before anyone else hears the car. The vibration is unpleasant. No one else “feels” the vibration.
Have you told other people about your misophonia and if so what was their reaction?
My husband and children know about the idiocy of it all and are on the whole patient but it’s difficult for them to live with. 2 of my children believe I have “passed on” the trait to them but not to the same extent. Is this learned behaviour I wonder?
I have told my best friend who is vey understanding and she is interested in the topic. She is a teacher and knows a child with misophnia. Another friend told me her daughter has misophnia and I was then able to open up and trust her.
My GP knows but thinks it’s just anxiety and sensitive hearing but it is so much more than that. I do not jump at or react to every loud noise, in fact I am quite calm when others are startled at sudden loud noises.
I haven’t told anyone else for fear of being ridiculed.
What’s your funniest/most ridiculous misophonia-related moment?
Giving my family a spoon to eat their dinner is ridiculous but necessary!
What helps you to cope with your misophonia?
If I hear bad grammar or incorrect pronunciation I have to mimic the correct word out loud to myself several times. If someone says “bruver” I have to keep saying “brother” and esenuate the “th”.
I walk out of the room for a few minutes to calm myself.
I practice The Havening Technique when I am having a bad time.
I listen to hypnosis relaxation on YouTube.
I tell my family how I’m feeling and ask them to be careful which makes dinner a bit more relaxing. Voicing it to them seems to minimilise it.
I drink too much alcohol to try and cope with it but I don’t obviously recommend this as it just makes things worse.
I give everyone spoons wherever possible.
When someone opens a sweet I politely offer to put the wrapper in the bin so that they can’t fiddle with it.
I turn off the tv or radio when I hear unwanted “noise”.
I try and relax by walking and drinking water.
I cry in frustration.
I make as much quiet “me” time as possible. NO TVs in bedroom!
I book restaurants early so it’s not too busy.
I use earplugs and iPod on transport.
I make excuses not to go to the cinema.
What are you misophonic superpowers?
I am hypersensitive and hyper vigilant and this I think makes me a good friend. I care a lot about people’s feelings and this is appreciated by many.
What’s the single most useful piece of misophonia related advice you’ve learnt?
To practise Mindfullness and the Havening technique. (CBT And EMDR (eye movemement desensitisation and reprocessing) did not work for me). Learning that I am not alone in this and that it is not about being an irritable and sensitive person – it is an illness.
What’s your very best life hack?
Treat everyone how you would like to be treated yourself. Least said soonest mended.
Is there anything else you’d like to share with your fellow misophones?
I always felt my problem was due to an overstrict upbringing and that my reaction to noise was a form of anxiety. I also wonder if there a link with autism? I have an open mind now and am very interested in learning more about it. I wish all my fellow suffers the strength and courage to face each day and a big thank you to you Tom, and also to the medical professionals who believe us!
And finally! The quick fire round…
Favourite place you’ve visited:
Polperro in Cornwall, U.K.
“Seasons of Love” from the musical Rent
A Thousand Splendid Suns by Khaled Hosseini
Favourite work of art:
The poem “Man of Word and Not of Deeds” by Percy B. Green
5 things you couldn’t live without:
My family – good books – good food – my garden – my iPad.