Living with Misophonia

For about 15 years I have been living with a little known disorder called misophonia (also referred to as ‘selective sound sensitivity syndrome’). I only discovered the term earlier this year when a friend posted answers to a chain questionnaire on Facebook entitled “Five things most people don’t know about me” saying that she has Misophonia. I then Goggled Misoponia to find out what it was. Googling it has been amazing for me – the relief I felt knowing I am not just a horrible person and that there are loads of other people who live with the un-explainable intolerance to certain sounds was glorious. This post is very difficult for me to write, as I almost feel as though I am showing who ever reads this how much of an evil bitch I am; although it does help to know this is a recognised disorder.

Misophonia, like autism is on a sliding scale. It isn’t that you either have misophonia or you don’t, but is more about if you suffer with it or not. Most people have noises they don’t like. Most people will find noisey eaters disgusting to a certain degree, or will have a strong aversion to sounds such as nails on a chalk board. This is normal. What is not so normal, is if you experience a strong emotional response to sounds that other people don’t even notice. The response can range from  moderate discomfort to acute annoyance or go all the way up to full-fledged rage and panic.

Basically once I notice a certain sound which annoys me I then become acutely aware of it. It is really difficult to explain what hearing certain sounds does to me but I will try the best I can:

• The first time I hear a certain sound I am then tuned on to it
• The next time I hear the sound a knot starts to form inside
• As I hear the sound more it is as though the knot is growing bigger and tightening, I start to clench my hands and stare at the exact place where the sound is coming from.
• I want to make the sound stop. Overwhelming urges to shout at the person making the noise, to shout “stop doing that!” or to physically make the noise stop envelope me.

I started to experience the above in my early teens. The above feelings and urges made me feel like a bad person. I felt bitchy for noticing these things about people, and when I mentioned noticing the noises to my friends, if they said they really didn’t notice them I would feel even worse. Now I know it is just how I experience Misophonia.

Some suffers say they struggle to create romantic relationships due to their partner making sounds that are triggers for them. Thankfully I do not have this issue. My partner does not trigger me at all. I find I am triggered most by people I don’t know or am not really close to, which goes against what most websites and other suffers say.

I wouldn’t say I am at the highest end of the scale, as from my research there are a lot of people who experience more severe reactions or who have more triggers than I do.

Everyone who lives with Misophonia has different triggers; no two “suffers” are the same. My triggers are mostly noises related to the mouth:

• Noisy eating (open mouth eating)
• Lip smacking/tongue sucking
• Slurping of drinks
• I also have triggers to certain words and non verbal sounds such as non verbal fillers, and repetitive song lyrics.

Here are some examples of what can turn me to a ball of fury. The examples below are completely made up.

Example 1: Non Verbal responses from the person with whom I am engaging in conversation with. The other persons non verbal responses are shown in bold.

The commute to work was awful this morning –Yea – When I got to the train station – hmm – the train was there – hmm – but the doors were closed – yea – so I thought I would try to get the bus – hmm – but it never turned up.

If I am speaking to someone who shows they are listening by making noises while I am talking I want to make them stop. Internal conflict is strong between my brain and ears wanting to do anything possible to make the noise stop, and my social development telling me not to be rude or bitchy. The only way I have learnt to combine my primal need and my social need not to alienate myself is to just stop talking. My stopping talking stops them from making the “i’m listening” noises.

Example 2: I can’t watch YouTube videos or watch TV programes where someone is peppering their sentences with verbal fillers such as “like”. I also get really angry if someone says “you know what I mean?” at the end of every sentence. In this example I have put what triggers me in bold.

When drying my hair I like wrap a t-shirt round my head instead of like a towel because it helps with like stopping my hair from like becoming frizzy.

I don’t know why this bothers me so much. It probably comes down to the constant repetition of the same word. Thankfully I don’t know any people in real life who speak in this way, so it only affects me by making me avoid TV shows or online videos where someone peppers their conversation with verbal fillers.

Repetition is a big problem for me. Listening to songs that use a lot of repetition in the lyrics is near impossible for me.

Misophonia makes me feel like a horrible person. I have never physically lashed out at anyone, but I regret to say I have verbally lashed out at people in my younger days. Controlling the urge to make someone stop eating noisily for example is getting easier as I learn how to live with my Misophonia. The first time the noise is made i am then tuned in to it, it is each time after that that I start to struggle to contain the fight/flight response. I have to remind myself that they can’t help eating noisily, or they are only being polite by showing they are listening, or maybe they don’t know how much they smack their lips/suck their teeth when talking. By reminding myself that this person is doing it deliberately, that they may not even be aware that they do it helps me to calm the rising anger.

If you think you have Misophonia or know someone who does I would love to hear from you. Here are some more websites you can look at to discover more about the disorder.

Websites to discover more about Misophonia

Misophonia Activation Scale – http://www.misophonia-uk.org/

News style TV report on Misophonia – http://newyork.cbslocal.com

Blog to gain advice on how to live with a child with Misophonia.  – http://megpoulinindeed.com/

For help and advice for friends and family member of someone who lives with Misoponia – misophonia-uk