Living with a neurological disorder

If it hadn't been for the internet, I'd have spent the rest of my life wondering what was wrong with me.

‘What’s that awful ticking noise, who’s tapping their feet on the floor, why can’t people eat without making that annoying sound, you sip your tea, you don’t slurp it, make it stop. Make it STOP! I’ll punch that person so hard. I’ll kill him. I need to run. Run. Now!’

This is what a person suffering from misophonia is thinking, nearly all the time.

Misophonia is a neurological disorder in which a person feels anxiety and even rage in response to certain sounds, which may be loud or soft, and are very common. It is also termed Selective Sound Sensitivity Syndrome. The sounds include coughing, sneezing, scratching, breathing, repetitive tapping of a pencil, amongst other everyday sounds. Neuroscientists have not been able to pinpoint the exact cause of misophonia, but are of the view that the pathology lies in the connection between the limbic system (set of structures in the brain responsible for emotions and behaviour), and the auditory system (responsible for hearing). However, this being established, there are still a lot of things that are not known about it yet.

Misophonia usually starts in early childhood and includes a few trigger sounds generated by one or more members of the family. As the person grows older, the limbic system’s response to these triggers becomes stronger and often the number of triggers increases, accompanied by visual stimuli. For the sufferers, exposure to these sounds for a couple of minutes is equivalent to an hour of nails being scratched on a chalkboard. They experience severe forms of rage, panic — and even disgust — and develop extremely avoidant behaviour. For them, being alone is better than sitting in a social gathering that causes anxiety.

I was diagnosed with misophonia at the age of nine. All of my triggers were limited to home at that time. Growing up with this disorder has not been an easy feat. I’m sure my family regarded me as somewhat strange, with all the temper tantrums I had, which in fact were only a response to the triggers.

Meal times were always the hardest. Every clink of a spoon on a plate seemed like a gunshot to me. If someone spoke to me while eating, I’d lose it. Finally, when it all became too much for me to bear, I started taking my meals to my room — and I still do.

The disorder is still regarded as a ‘new’ disorder. Neuroscientists have yet to come up with a cure and little progress has been made when it comes to devising ways to cope with the disorder and to prevent the affected people from becoming socially dysfunctional. Many people have come up with their own ways to cope with the disorder; the use of ear plugs, headphones and echolalia (mimicry) usually help decrease distress.

I accidentally found out about misophonia on the internet. If I hadn’t, I’d have spent the rest of my life wondering what was wrong with me and why I reacted to certain things in ways that can only be described as ‘unusual’. I was relieved to know that there was a name for all that I’d experienced since childhood, that it wasn’t a figment of my imagination, and most of all, that I could get help.

Published in The Express Tribune, August 23^rd, 2013.

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