Well, this is exciting.
The first post, in a brand, spanking new blog!
Where to start? Well, why not with the reason for starting this blog: the realisation that at 46, I am still learning more about myself every day (often hard to accept for the girl who thought she knew everything at 17). I want to share my take on the world, including experiences, opinions and beliefs.
In the last six months, I have made two startling, and life-changing discoveries. The first was that I have something called Misophonia (the second I will save for another post). This is a very little- known condition (so much so that my spell check fails to recognise it), that is often described as a hatred of noise. I wouldn’t put it that simply; to me, it is fairly complex, and doesn’t only involve noise (peripheral movement, such as jiggling legs, is also a trigger for me, and many others). The cause is unknown, but it is classed as a neurological disorder. I am not going to explain it in detail, but here is a website that has more information: http://misophonia.com/symptoms-triggers/. The reactions in Misophonia sufferers are unique, and causes a fight or flight response. With me, it has usually been fight.
My earliest recollection of Misophonia was at around 12 years old, which is a common age for it to begin. I would (and still do, to some extend) become literally enraged by certain noises, such as my family eating crisps or apples (although this is not an exhaustive list). I would lose my temper, scream obscenities, throw things and just generally behave appallingly. It only happened with people very close to me (the external display of anger, that is; the triggers were all around, but I managed to control my reaction). At that young age, I never thought to remove myself from the situation, and would just stay and shout; I would literally shake with rage. My mum’s reaction was just to condescendingly state that it was okay for me to make a noise eating, but not for them; therefore, I always assumed that it was because I was an intolerant, nasty, and aggressive piece of work. Although it has always triggered anger, I never really associated the noise with the anger, if that makes any sense? Of course, I knew the noise had made me angry, but I think I just believed that I was an angry person who just so happened to be annoyed by noises.
However, everything changed a few months ago. By chance, I stumbled upon a link to a Misophonia website, and for the first time, I discovered that not only was there a name for the emotions and reactions I experienced, but that I was not alone. There were thousands (actually, an infinite amount) of people just like me. The realisation hit me extremely hard. At first, I cried at the realisation that other people felt the same way as me, and that I wasn’t evil and intolerant. And then I cried for the 30-odd wasted years I had punished myself; guiltily recalling events over and over again, where I had screamed at my mum, when she had done nothing wrong. And I also cried with absolute, abject relief: this was NOT my fault; this was out of my control; this was down to a neurological disturbance. It was tough to realise, but so liberating at the same time.
So, how does Misophonia affect the 46-year-old adult? Well, before realising there was a name for what I struggled with, it was hard. Do you know what it feels like to scream at someone because they are making a noise eating? To see the look of hurt and confusion in someone’s eyes? It tears at your soul; that’s for sure. Over the years, it has eased somewhat, but looking back; it has always played a huge, omnipotent part in my life. Knowing it is Misophonia helps beyond words. Now, it is easier for me to remove myself from a potentially fraught situation before it spirals out of control. I am also able to tell my family when I am in the early stages of being triggered; facing it is therapeutic. It’s like saying: “I can feel it approaching, but that’s okay. I have the power to control it”. Of course, I can only control it to a certain extent, but acknowledging it (and understanding that my reaction doesn’t make me a bad person), really helps.
So, I’m getting there. Not all picket fences and roses, but getting there. I still feel guilty, though. I took my children to the cinema last week, and they had popcorn (just the thought of this is hell for Misophonia sufferers). I mentioned to my nine-year-old a couple of times that he was crunching, and moving the popcorn around loudly, but I felt bad. I didn’t want to spoil his fun, so I stuck my fingers in my ears, thinking he wouldn’t see me. I felt a gentle tap on my shoulder, and he whispered “sorry”. I asked him what he was sorry for, and he said, “that my noise is making you sad”. Wow, that’s hard to hear. It’s hard to know your behaviour is having that kind of effect on your children. I’ve talked to them about Misophonia, and I think that on a basic level, they get it, but kids this age often blame themselves for things, and I don’t ever want them to believe that they are doing something wrong. This is MY problem, and it hurts to land it at their feet.
As well as the obvious relief I feel, recognising I have Misophonia has also brought embarrassment; it is something that many sufferers are not willing to share with others. When I sit and think about Misophonia, it sounds ridiculous in my own head; how could noise make me react in such a violent way? I have told very few people about it; I feel like a fraud, trying to make up a disorder to cover my intolerance.
There has been a fair amount of exposure lately, with several newspaper articles being written. Unfortunately, a lot of negativity and ridicule have arisen from it; sadly, in today’s society, if you don’t understand something, the easiest thing is to belittle it. The main reason for this is that many feel annoyed by crunching, people eating with their mouth wide open, sneezing, breathing and so on. What they are failing to understand is that Misophonia sufferers do not feel slightly irritated. They feel agitation, anxiety, rage and often have an acute fear that at any minute, they could completely lose control.
Hopefully, one day they will truly know what causes it, rather than speculation and guesswork, which is all they have now. Perhaps, they may even find a cure. We can live in hope.
If you’d like support, please check out (you don’t need to be from the UK): https://www.facebook.com/groups/25590393130/