‘Most people have a noise they don’t like, so I didn’t consider getting any help for it – until it progressed into panic attacks over the sound of breathing or speaking,’ says Kate, 16, from Wales.
Kate lives with misophonia, a disorder that has been controlling her life for the past nine years.
People with misophonia are affected emotionally by common sounds – usually sounds made by others. Fight-or-flight and anger responses can be triggered by common sounds such as breathing, yawning or chewing; and can make the sufferer feel as though they need to escape.
Kate says that the disorder really took hold two years ago, when she started to dislike chewing noises. This turned into having an extreme reaction to sniffing and shouting.
Kate says misophonia affects her all day, every day, and it’s made leaving the house impossible.
‘I have to go to less busy places and prepare myself to go out with others,’ she tells Metro.co.uk. ‘I have to wear noise cancelling headphones on full volume all day every day – especially with lockdown because it gets worse around certain people who I happen to live with.
‘Even the thought of a noise or seeing someone do something that should make a noise, like touching their face, can be triggering.
‘People think I’m trying to control them when I’m just trying to prevent a panic attack.’
Kate adds that her education has been affected, because once she hears a trigger noise it’s all she can think about. She’s unable to work when she’s anxious or distracted.
She hasn’t eaten dinner with her family in a year and a half.
‘I dread events where not everyone knows about my misophonia, including Christmas or birthdays’, she adds.
‘I doubt I’ll be able to get a job or continue my education.
‘When I hear a noise I dislike, I feel a huge amount of anger bottled up and I need to leave to immediately let the anger out however I can – which is usually ticcing.
‘It’s hard to describe. Most people hate the sound of a fork scratching a plate or nails on a chalkboard. For me the feeling is way worse, and way more often.’
Kate says one of the worst things about living with misophonia is the lack of support and awareness. Her neurological disorder prevents her from living a normal life, but as not many people know about it, she doesn’t know who to talk to. Not even counsellors have been able to help.
‘I don’t have a choice when it comes to being open about it with close friends and family,’ she explains.
‘If a family member stays with us, my parents have to explain everything to them, which makes me feel really guilty because I feel like I’m making their life a lot harder.
‘I don’t tell people unless it’s necessary though. I find it embarrassing.’
What is misophonia?
According to the Misophonia Institution, misophonia is a condition where a person has a severe sensitivity to specific soft sounds and visual images. When they hear these sounds, the person has a strong emotional reaction such as hate, anger, anxiety, rage, resentment and physiological distress.
They say: ‘A person experiencing misophonia generally has excellent hearing. It’s not a sensitivity to the volume of sound, but an emotional and physiological reaction to specific sounds.
‘The misophonic reaction appears to be an involuntary physical and emotional reflex caused by the sound. The sound directly activates the Autonomic Nervous System which is located in the brainstem and the Limbic System, which is associated with emotion. This is a direct connection between the sound and a reflex reaction.
‘Misophonia seems to occur more frequently in a person with a higher level of anxiety, stress or compulsive behaviour.’
Kate uses movies as a form of distraction, to help calm her symptoms. She also uses fidget toys and noise cancelling headphones, and her cat helps to calm her down.
At the moment, Kate isn’t receiving any treatment. She’s hoping to see an audiologist to get a hearing aid that blocks out background noises. For now, she’s relying on her mum’s help to protect her.
She says: ‘Some people go out of their way to make trigger noises around me because they think normalising it will help (which it doesn’t, it actually makes it worse) but my mum always warns me before she eats or drinks so I can leave the room or look away.
‘She tells other people about it which is very helpful because not a lot of people know about misophonia so it can be hard and confusing to others when i explain that I don’t like noises.’
Kate’s parents say Kate had sensory issues as a young child, such as the feeling of towels, the sound of scratchy coats and the feeling of seams in her socks.
Kate’s mum, Sally, says: ‘Kate hid her misophonia from us at first and when we would eat dinner, she would have her head down covering one ear with her hand and she would just eat as fast as she could, usually leaving food and making excuses to just get away from the table.
‘When she first told me the problem, it was very confusing as I had never heard of anything like this before.
‘Misophonia is quite often hereditary but the only sound I have a problem with is things with a certain scratchy texture such as certain wallpaper and those scratchy 3D stickers.
‘It’s heartbreaking. She basically cannot function properly now, the past six months she seems to have just given up and has stayed in her room as that is the only way she can control the sounds around her.
‘We eat separately, don’t drink around her, speak too loudly, sing, whistle, hum or make movements that trigger her such as touching our face, moving our feet, rubbing hands or picking our nails.’
Kate is currently seeing a therapist at CAMHS, which has been helpful in terms of learning calming techniques.
Just two months ago, Kate’s parents found a misophonia community on Facebook. They didn’t realise there were so many who suffered from the condition – the group had 3,500 members.
The group, Misophonia – Parents of Children with Misophonia, has taught Kate and her family so much.
But they feel there still needs to be more awareness of the condition.
‘I mention it to doctors and therapists and even they look confused,’ says Sally. ‘There is no cure or help and I’m terrified that new symptoms are being added to the list every day.
‘I’m concerned for her future and don’t know how she will be able to go off to college or get a job.
‘I would love to be able to raise awareness for this condition and hope that if anyone is suffering and has never heard of misophonia, just to reach out for support, and know that you are not alone.’
Need support? Contact the Samaritans
For emotional support you can call the Samaritans 24-hour helpline on 116 123, email [email protected], visit a Samaritans branch in person or go to the Samaritans website.
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