Yet another newcomer here :)

[Guest guest]

Hi all,

I joined this group yesterday and I can already tell that I'm among people

who'll understand. I'm 23 years old and live in the UK. I've been

suffering from sound sensitivities since I was a young child and had to

share a bedroom with my younger sister. The sound of her breathing when she

was asleep used to upset me so much that I would hit her, put pillows over

her face, pinch her arms - I would try anything to get her to roll over or

wake up. This got me into a lot of trouble with my mum and grandma (with

whom I lived) and they thought I was very selfish. They didn't understand

how angry and upset the breathing sounds made me. Eventually I started

taking my bedding downstairs and sleeping on the sofa, but I got into

trouble for that, too, and was ordered back to bed. In addition to that, my

mum and gran would always watch TV after we'd gone to bed, and I could hear

it through the floor. Bedtimes were not fun.

As I got older I gradually realised that I have more and more

sensitivities - sound, sight, and touch mainly. The sound of people eating

(and the sight of it, too), sniffing, whistling, wheezing, coughing

repeatedly, crying, brushing their teeth, scratching their heads, walking on

carpet with bare feet... and also some other non-human noises, like ticking

clocks, clicking computer mice, tapping keys (on a keyboard), bass music,

vacuuming, alarms/sirens, static sounds (like the sound that comes out of

the TV that nobody else seems to be able to hear), unexpected bangs or

shouts (these make me cry in absolute terror), scissors cutting anything,

fingernails scratching on top of cotton t-shirt material (sight and sound).

I also hate the feel of sandpaper, velvet, nail files, labels in clothing,

anything around my neck, anything touching the front of my neck, and having

my hair pulled even gently makes me scream out in pain - I think my scalp is

sensitive. Then there are the sight sensitivities, like clusters of

anything, seeing people eating or picking their teeth/fingers/skin, people

twirling their hair, any repetitive patterns, any tiny lights on electrical

equipment (the little green and red on/off lights, for example), the way you

can see the Adam's apple on a man's neck (I have to turn away when I see a

man with a really bulgy Adam's apple - sounds crazy, I know). So they are

mainly sound sensitivities, but I am also sensitive to certain sensations

and sights, as well as some textures in food and even the sound of certain

words!!! Most of the words have something to do with either food or sex.

I explained my problem to my mum, who eventually started to understand but

didn't know what it was, and I explained it to my doctor - who had no idea.

He suggested tinnitus and I didn't understand where he got that from. I

started wearing earplugs at night, which helped a LOT, although I started to

get ringing in my ears after wearing them for a while. I started university

just over four years ago (I have since graduated) and whilst I was there, I

started seeing an occupational therapist to discuss my problems, as I was

having a great deal of trouble in exams. In one particular exam (one of my

finals - a very important exam) I stormed out in floods of tears because

they were showing a film next door and I could hear the muffled voices. My

teacher was very unsympathetic at first and basically told me I had to deal

with it, that she was sure other people were " finding it annoying " as well,

and I told her it wasn't the same for them. She said I wanted special

treatment and she couldn't give it to me. So what she did in the end was ask

the group if any of them wanted to move into a new room and several people

said they did. So those people moved to a new room and that way everyone had

been given the choice - thank goodness, or I wouldn't have been able to

continue with my exam.

So anyway (sorry - I'm going on a bit, aren't I?) the occupational therapist

went through a rather lengthy period of assessment with me and basically

told me I have sensory defensiveness. This was a major relief for me, to

hear someone confirm that I wasn't a freak of nature and that I had a real

medical condition that was causing me to react in this way to things. She

wrote up a very long sensory report for me and I was very pleased with it,

because it outlined most of the things we had discussed. The only problem

was that sensory defensiveness did not account for many of my

sensitivities - no textbook definition of sensory defensiveness mentioned

the eating noises, the breathing noises, the people picking their teeth, the

people cutting up their food ready for eating. It was a long time before I

discovered references to soft sound sensitivity syndrome and honestly, when

I first read the description of it I almost jumped up and down screaming

" that's ME! that's ME! " because it was just spot on. Everything was spot on.

So I think I have now discovered that I do have sensory defensiveness,

including hyperacusis, but that I also have soft sound sensitivity syndrome.

I am sure of it.

And that was my rather long introduction. Sorry. :/ I am very pleased to be

here and will try not to write this much next time.

xxx Bonnie