Miso-what?

I just wish more people had heard of misophonia. This is why I'm blogging - my small contribution.

Our family doctors are great. I told them about it once I knew it explained Diana's behavior. I showed them the 20/20 misophonia episode and they got it. They've written referrals to other medical professionals that say she has "misophonia" (and we have to explain to them too). But they don't always get it. Although I've done my best to explain.

Sometimes she gets the "you will have to get over it" lecture. "In life you will have to be in situations where people do these things - you'll just have to deal with it."

Diana avoids a lot of family situations because they trigger a reaction. Let's say she would have an attack - is that easier to understand?

Anyone with misophonia will tell you they can't just "get over it". I imagine it's like saying - just get over your epilepsy. I've read testimonies of other people with misophonia and I get that it's not nice and it can't be helped.They suffer a lot sometimes at work, with family, with people who don't understand or think that they will help (or deliberately torment) by exposing them to extra noises. This is what I fear for Diana. She has a severe case. But luckily her reactions are most severe to family members and not at school - so far.

She'd rather be safe and alone than go into a situation where she's exposed to major trigger noises (and has an "attack"). I read of someone whose epilepsy was triggered by a certain person's voice (people with misophonia can relate to this). So if your voice triggered your child's epilepsy what would you do? Substitute "misphonia" for "epilepsy" and this is the problem facing some families.

The other night when I'd just gone to bed Trigger Person Number 1 went into the kitchen where Diana was. She totally avoids him - she says all his noises are triggers. I heard, thump thump bang (door being slammed) as she escaped.

She came upstairs in panic mode and knocked on the door. We sat together in the dark while she waited for him to leave the kitchen. I'm Trigger Person Number 2. No problem with my visual triggers in the dark. I put my hand on her head to comfort her. The palm of my hand was resting on the top of her ear - I could feel it moving. She was poking her ears (and the earplugs that she always wears at home) in the dark to block out any sound.

That's one of her coping strategies. She uses it when she's going into a room without knowing what's going on in there. She uses it if she's in danger of being triggered, or to mask noises that catch her unawares. Sadly Trigger Person Number 1 thinks she does it to annoy him. I'd say doing it in the dark means it's for herself.

I thought perhaps this is progress. She didn't rush outside and sit in the car, and the expression of anger was only a door slam. Maturity? Learning to cope better?

It's pretty sad when you can't handle being around your dad.

Sound sensitivity

My daughter has an extreme sensitivity to certain sounds. This has come to include most sounds made by members of her immediate family. Particularly her parents. Misophonia is selective. So sufferers can be affected by a noise made by a trigger person, but it seems the same noise made by another person doesn't affect them. Luckily she copes fairly well at school and in the outside world - except when she's with me mainly. I have to be careful how I walk - the noises and the movements I make. People with misophonia can have visual triggers to movements in their peripheral vision too.
As I understand it the reaction caused by a trigger sound is an uncontrollable feeling of rage. This is probably one thing that makes it very difficult for people to understand or believe in misophonia. The rage is not always acted out but I get the feeling the acting out is more common in children. Through belonging to support groups I understand that the feeling of anger is not something that can be helped or controlled.
Misophonia causes misery and ill-feeling in families. This is certainly our story. Sometimes Diana is optimistic about the future and other times she can see no future.

A new blog

A strange affliction - I hadn't heard of misophonia a year ago. Now it blights my life. This is a little-known and hard-to-understand disorder. In its most extreme form it seems to be very rare. It's an internet disease. As it becomes more widely known, people who have been suffering for years suddenly realise they're not alone and there are other people like them. Some people find out by googling their symptoms. This is how my 16 year old daughter found out. She found out and then waited for the symptoms to worsen as the internet said they would. Who knows if that was self-fulfilling? One bright light in all of this is that at least we know what it is.

Hatred of sound. Sound rage. Selective Sound Sensitivity Syndrome. These are all used to describe misophonia. I don't really understand what it feels like but I see the sudden change of mood, the panic, the need to control her environment, the fear of being exposed to a trigger. And it's not just sounds - movements as well.

Most health care professionals haven't heard of misophonia. There's no reliable treatment. Some people stumble on something that helps, but what helps one doesn't necessarily help another. A lot of research is needed.

I'm starting this blog to give some insight into how this thing impacts on sufferers, their families, and their relationships.