This is the #21 edition of our My Misophonia Story series. This week features Marianne (40) from the The Netherlands. Each week we’ll feature a new reader story, so if you’d like to share yours, please drop us a line. Marianne, take it away…
Where are you from?
Amsterdam, The Netherlands, but currently living in Cape Town.
What do you do for a living?
I work as a freelance Yoga teacher, writer and I run all kinds of projects (online platforms) that are all linked to what I love doing myself.
What are you passionate about / what are your hobbies?
Yoga and hiking, and I must admit I hike more often than that I practice Yoga, even though I teach it. I also love reading about Yoga and psychology and I love sharing what I read about with others via my work.
How old were you when you first realised you had an issue with certain sounds?
I have always known I was very sensitive. But only when I was 38 I found out that my sound sensitivity has a name. So silly, but sounds have truly bothered me my whole life, but only during the two years of intensive therapy sessions that I have just finished, did I realise that sounds are the reason why I have had so many challenges in my life.
When did you first find out it was called misophonia?
When I was having therapy at the age of 38, I came across the term whilst I was researching all kinds of diagnoses people are given who have an issue with sounds.
What are your 3 biggest triggers?
Just three? Plastic bottles & wrappers, grapes, throat scraping.
Do you have any other sensory quirks?
It often feels like people walk through me and I hate it when people come close (touch) or touch me (suddenly). I don’t like it either when there are a lot of visual stimuli (vision) and I absolutely hate the smell of cigarettes and cigars (smell). Luckily I don’t have a problem with the sense ‘taste’. I can’t stand repetitive moments people make with their feet.
Have you told other people about your misophonia and if so what was their reaction?
Most people don’t understand it and start making the sounds that I just told them about. They think it is funny (which it is NOT) and they would like to see what will happen with me if they make a certain sound again. Others have told me that the term ‘misophonia’ puts them off. Others luckily responded kindly and told me it must be very difficult to live a normal life with this condition. Thank you Universe that those kind people also exist!
What’s your funniest/most ridiculous misophonia-related moment?
I can’t really recall funny moments I am afraid. Only silly ones where I just once again feel the need to ask people to SHUT UP! 🙁
What helps you to cope with your misophonia?
Oh my word, I am sure I have a whole list. There we go:
Tell people to just STOP making that noise.
Going somewhere else, away from the sound.
Not going to certain events at all.
Earplugs in when in bed. Earplugs in my bag for just in case.
Putting music on whenever I can, but gentle piano music. Just instrumental music.
Having a fan on. I love the sound of wind.
Have a lot of quiet time in the morning to go walking for 1-2 hours before I go home to work from home.
Quiet time also means hours without a phone laptop and people. Just me!
No TV in the house. Hate it! There is just such much nonsense on it.
Part-time job, and I am now in a phase that I only work from home when I feel rested and inspired and I am not planning on working at an office ever again. It is just not me, even without the misophonia, I don’t believe in that system.
Hiking, walking, running and doing Yoga; I need to move every day and be outdoors close to nature every day.
Less to no alcohol and no more coffee. It agitates the body, mind and heart. It just creates more fire in my system and the sound triggers make me fiery enough ;)!
Meet people at home if possible or only in town if needed for just 1-2 hour max. and at a spot that I have chosen.
Sit with my back against the wall, so I can see what happens in front of me and I don’t have people bothering me behind my back.
Therapy. I believe in talking to someone on a regular basis who is trained to be compassionate.
Acupuncture: I believe in trying whatever wonderful techniques that are out there to see whether I can ease my body, mind and heart.
Explain to people what happens to me when it happens. I don’t care what they think. I just want to be safe and comfortable myself.
What are you misophonic superpowers?
My misophonic super powers? I have always noticed little changes in my environment and in people’s moods. I know things just because I know them. I don’t always have an answer for it, only I do use my intuitive side a lot. Also when I am teaching Yoga. I like it when it is quiet and peaceful. People have said to me it is exactly for that reason that they join my classes. I apparently radiate that quietness when I teach and they come to my classes to quiet down and to feel my quiet presence. Sometimes it is also just completely blank and quiet in my head and I respond intuitively to what happens around me. I only don’t know how my Misophonia is related to it exactly, but this is the first thing that comes to mind.
What’s the single most useful piece of misophonia related advice you’ve learnt?
I read it in a book on misophonia. You can tell the amygdala in your brain the following whenever if fires to a triggering sound: “It is a sound. Not a threat. Thank you!”. You can see the Amygdala as a friend that gets scared too easily and you need to comfort it. Telling it a sound is not a threat, you basically reassure it and it quiets down.
What’s your very best life hack?
I have been given so much already in my life, because I told people who I am, what my plan is and what I am looking for. Sometimes I don’t even need to ask for what I need and things are already offered to me before I even ask.
So perhaps it it:
Is there anything else you’d like to share with your fellow misophones?
Keep on trying. Find a cure that works for you.
We are all different, even in our struggles with Misophonia.
Try whatever you think will be useful.
I attended group therapy at the AMC for dealing with Misophonia, but since it still was one big experiment, I don’t think I learned much there. What I do know after having done 9 sessions with them that ‘stress management’ is the key. I only already knew this. Make sure your bucket doesn’t overflow and sounds will hurt your system less.
I am now having acupuncture treatments to see what Chinese Medicine can do for my Selective Sound Sensitivity. If this therapy doesn’t work or not as expected, I will continue my search. Only who knows perhaps Eastern Medicine has a cure that we in the Western world never thought about trying.
And finally! The quick fire round…
Favourite place you’ve visited:
Don’t have one.
Just love the sound of the ocean and the wind in our sky and trees.
Finding Your Way in a Wild New World, from Martha Beck.
Favourite work of art:
Don’t have one.
5 things you couldn’t live without:
Just quickly I would say:
Hugo (my husband)
Moving my body
Believing in the fact that all is possible.
No just kidding … also …
Feeling safe, loved, cared for and being treated respectfully and honestly.
My name is Susan. I have struggled with both sound and movement adversity all my life. I thought it was MY issue. MY problem. MY weirdness. All my life. I’m 62. I only recently discovered MY problems have names. I discovered other people suffer as I have all my life.
My partner, my bothers, my friends, my coworkers, my family all do things , make noise and movement that DRIVE MY NUTS! Throw in complete strangers who tap, snap gum,chew loud, wag their feet,make creamy noises with their mouths…..etc….etc. The only time I’m at peace is alone in my room. Not a wonderful way to live.
Dear Susan, I haven’t been online on this website for a long time. Only now that I am finally putting my e-learning modules online and I was checking articles I once wrote, I saw your comment. How are you doing Susan? Have you been able to find a way to cope with your misophonia? XO, Marianne de Kuyper