I feel such revulsion, I want to scream

 

MY HEALTH EXPERIENCE:Severe reaction to eating noises is a genuine condition

I SUFFER from misophonia. I have strong negative reactions to soft sounds, particularly those associated with eating – lip-smacking, biting, chewing. I also find breathing sounds difficult to tolerate.

I would describe my reaction as akin to hearing fingernails on a million blackboards. Every fibre of my being contracts and I feel such revulsion I want to scream and run away.

After a lifetime of suffering in silence, thinking it was just me and not wanting to hurt people’s feelings, I am finally, at the age of 69, speaking out about this condition as I now know that, although uncommon, there are quite a number of fellow sufferers in the world.

A lot of things make an awful lot of sense to me now looking back over my life. As a child I was always getting mad and leaving the table. I used to start arguments just so I could get away. My mother used to always call me contrary.

I’m from a large family of eight siblings and I shared a bedroom with two of my sisters. I used to end up sleeping on the floor behind the door to get away from their sounds. There was nowhere else to go in the house except down to the hall, so I would go behind the bedroom door. I remember that so well and I never knew why.

My first adult memory of a severe reaction to eating noises was when I was 27. I was in the back seat of a car with my mother driving across the Jordanian desert to Petra. She was eating something noisily and I literally tried to meld myself into the door, my every nerve ending taut and screaming with this unimaginable mental anguish.

There are so many situations in which one is powerless. Trains and buses are especially bad as there is no escape from crinkling of crisps packets and the sounds of eating or chewing.

I cannot watch television soaps, for example, as there is an inordinate amount of open-mouthed, very noisy and quite repulsive eating practices. I watch television with the remote in my hand and fingers on the mute button. I never bought crisps for my children because I couldn’t bear the noise.

It is such a hard thing to try to explain to anybody. It sounds crazy. Yet I am not mad. Only other people with this condition will ever truly understand, but I do know now that I am not alone in this. I have tried not to let the condition impact on my life. I’ve never mentioned it. If I’m out for dinner or eating with people, sometimes I sit there with every muscle taut. Everything seizes up on me. I might put my hand up to my ears and pretend I’m holding my head. And I just bear it until it’s over.

It was always difficult to hide my reactions, but I think I did so, quite successfully, all my life. You can’t go around saying to your friends, “Oh don’t eat like that” or “close your mouth”. You don’t want to hurt other people’s feelings.

I have suffered from serious migraine in the past. Only now I’m wondering is the misophonia related to that. I have never sought treatment for misophonia. A lot of neurologists have never even heard about it. My own doctor hadn’t. I only confided in him recently.

I only realised that what I suffered from was an actual condition a year or so ago. What actually started me thinking was an e-mail from a work colleague. Her daughter was playing up and getting angry. And she had an awful lot of the same symptoms as myself. And her mother didn’t understand.

So I did a bit of research and I found some websites in the UK and the US, such as misophonia-uk.org, and I read about the work of US audiologist Dr Marsha Johnson, who has done a lot of research into misophonia.

I was delighted to find out there was a name for what I was suffering from. I thought it was just me. And most people start out thinking that it is just them and initially think, “Oh, I just can’t bear that noise”. But it’s more than just not being able to bear something, it’s awfully difficult to explain it to anybody.

I’m now finally talking about it because there must be a lot of people who are suffering in silence. I am not the only one. I don’t like to think of other people suffering and facing a lifetime of keeping this bottled up.

There is such a sense of shame that goes with it. You think, “God, why do I feel this way and what is the matter with me and why aren’t I normal?”

When I think about my childhood and about the problems my colleague’s daughter had, it has crossed my mind that other “difficult” children may be suffering from hyperacusis or misophonia and being wrongly diagnosed with OCD or ADHD.

Misophonia and Hyperacusis: What are they?

Misophonia, literally “hatred of sound”, is a form of decreased sound tolerance. It is also known as Selective Sound Sensitivity Syndrome or 4S. People with misophonia find it very difficult to tolerate the sound of, specifically, other people eating, breathing or coughing.

Hyperacusisis a wider form of intolerance to sound. A person with severe hyperacusis has difficulty tolerating everyday sounds, which seem unbearably loud to them but not to others. It is thought to be acquired as a result of damage sustained to the auditory nerve or inner ear.