Deaf Awareness Week – My Story

Hello everyone. I found out earlier today that this week is deaf awareness week. As someone who has a hearing loss I’m going to be sharing the shit out of related articles, and posts on Twitter and Facebook this week. I also decided to share my own deaf story.

How Deaf Are You?

This is a question I get asked quite often when I tell people I’ve got a hearing loss. Deafness can be classed as mild, moderate or severe. It’s also defined in terms of frequencies, high or low-frequency hearing loss.

When I was a child my parents were told I had high frequency hearing loss. Although  my hearing loss is worst at high frequency , as a diagnosis it wasn’t that useful. The assumption being  it was ‘only’ high frequency noises I couldn’t hear.

As an adult I’ve been diagnosed with moderate hearing loss. This diagnosis is more meaningful to me as it reflects the fact that my deafness impacts on my every day life. However most people won’t realise there’s anything wrong with my hearing unless I tell them.

My diagnosis story

I have what is known as congenital hearing loss. That basically means I was born with it, and it’s a genetic condition. You might assume that ment I was diagnosed at an early age, but that wasn’t the case.

I was bought up by foster parents, and there was very little known about my family medical history. The deafness thing was something nobody was aware of. When I started primary school I was labeled a daydreamer. Someone that never paid attention to what was we were told. I was the girl who got lost at London Zoo as I didn’t hear  where we were suppose to be meeting. This ment I wasn’t popular with my teacher, she hated me and I didn’t think that much of her either!

At some point somebody realised maybe I couldn’t hear, rather than I just wasn’t listening. I had the usual hearing tests (listen to the headphones and press the button every time you hear a noise) and the  diagnosis came back as high frequency hearing loss. The doctors told my parents it wasn’t a significant problem, and the only adjustments that needed to be made was to ensure I was sat at the front of the class in school.

Tinnitus

I’m adding a section about tinnitus at this point in my diagnosis story as I was probably 14 or 15 before I realised tinnitus was a thing. I remember watching a medical thing on telly. I had a real WOOOAAHH moment when I realised not everyone has a constant ringing in their ears. Prior to that its something I had never questioned.

Tinnitus is something that goes hand in hand with hearing loss. It’s caused by damage to the fine hairs in the ears  that detect sound waves. In healthy ears these hairs send signals to the brain when they’re at rest. If the hair is activated by a sound wave the signal sent to the brain changes. The brain registers the difference in the signal as a sound. If the hairs  become damaged, as well as not being able to register sound waves, they stop sending the ‘at rest’ signal. the brain interprets the lack of baseline signal as a sound.

People may consider tinnitus to be a trivial condition. It’s not in itself dangerous and certainly not life threatening. However sufferers and tbeir families will tell it can be far from trivial. I consider myself lucky in the sense that I’ve never known life without tinnitus. Although it is annoying and intrusive, I’ve learnt to deal with it. People who develop the condition later in life can find it horrendous. I’ve spoken to people who have had loved ones killed themselves because they couldn’t live with it.

Adult diagnosis and hearing aids

I dealt with my hearing loss during my teenage and early adult years. When my first-born began school it became apparent that he had problems with his hearing too. I took him to the doctors and he was tested and given hearing aids. During the trips to the hearing clinic I spoke to the doctors about my own hearing. They advised me to get re-tested by my doctor so that I could be referred to them.

I got the referral and had all the tests. In true Mrs A style my particular hearing loss isn’t the easiest to fix.

Graph. Decibels written along the side axis, low F sounds to high F Sounds written om the botton axis. Line labeled perfect hearing along the top. Line labeled typical hearing loss along the middle. Diagonal line labeled my hearing loss.

This beautifully drawn graph (it took me ages) shows the difficulty in treating my hearing. For people with hearing loss that is the same across all frequencies (labled typical hearing loss, although I don’t know how typical it is) hearing can be improved by amplifying all sounds. This can be done with a hearing aid.

Because my hearing loss isn’t the same across the board it required an aid that would boost some frequencies more than others.

I eventually had my first hearing aid at the grand old age of 32. It wasn’t a success. I found that even though the range of things I could hear was greater, there was still a lack of clarity in sounds. I found it impossible to ignore background noises (that I previously hadn’t heard). Also I found it really weird when someone spoke to me from a distance, for example across a table. I would see their mouth move, but their voice didnt seem to be coming from them.

In short hearing aids didn’t work for me. I think if I had been much younger it may have been different. However after 32 years in my quiet world I found ‘normal’ sounds far too intrusive. I’m told if I had given it months rather than weeks my brian would slowly have adjusted, but I decided I actually preferred my quiet world. And that is an acceptable choice.

So whats life like being a  bit deaf?

For the most part perfectly normal. It’s not something that I think of on a daily basis. I do make some adjustments to account for my hearing. I have subtitles on when I’m watching telly. Mr A is use to them now, but other people who visit find then really distracting.

I avoid crowded places when I go out with Mr A or friends as I can’t follow conversations unless it’s quiet. This can make me come across as stand offish or possibly just plain rude in group settings. I can’t join in conversations because of my hearing, so will often just stick my nose in my phone instead.

When I’m talking to people I lip read along side listening to them. When this post came up on my Facebook feed this morning I read it like a nodding dog.

Four posters made for deaf awareness week. One says I cant hear you if you cover your mouth, with a hand over half the writing. The second says i can't hear you if you dont face me. The writing is back to front. The third says I cant hear you if you mumble, the words are missing parts of the letters. The last one says speak one at time. These words are printed several times over each other.

The post was created by Action Deafness, a Leicester based charity that provide buisiness solution services to deaf and partially deaf people around the UK.

The focus of the posters is how to talk to people who have hearing problems. The things they mention are all things that make it harder for me to hear people talking.

How can people help those with hearing problems?

It’s really not difficult to talk to people who are a bit deaf. Speak clearly, don’t cover your mouth, look at the person when your talking and in a group conversation let people speak one at a time. Really these are all practices people could adopt in all their conversations as they form the basis of respectful communication.

Have you got a hearing problem, or know anyone that does? Are you doing anything to help promote deaf awareness week?

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Thank you, Mrs A Xx

15 Comments

  1. Lisa Pomerantz

    May 31, 2018 at 8:30 pm

    My sister had a cold, and then the three little bones in her ear fused together and she was totally deaf in one ear. She mad the most of it, parked herself in the proper chair socially and turned the deaf ear up to sleep. Now she has a tiny, teeny minuscule hearing aid and she is so happy! I am happy for her too! Thanks for this education and sharing! #LGRTStumble xo

  2. nightwisprav3n

    May 31, 2018 at 2:27 pm

    It’s so funny (not haha funny) that you wrote about this Tracey because I think my oldest may have some hearing loss as well. Accept, is it hearing loss if it’s always been a problem? With certain sounds he can hear better than most of us but there are other sounds that he cannot. His doctor suspects that maybe he has an inner ear problem with hearing because it’s the low frequencies he can’t hear very well. But this has always been something that was brought to my attention when he was little but I was also told that it could be a “symptom” or “drawback” of his Autism. Until recently when his Autism specialist at school told me that he is now starting to possibly suffer from that hearing loss. Still, everyone is sort of down playing it. Even his insurance company who refuses to pay for it with the referral I’ve been given. It’s been a real pain in the ass to get him seen and tested. Thank you for writing this Tracey. I found this very helpful! #LGRTStumble

  3. mummyhereandthere

    May 29, 2018 at 6:31 pm

    Really useful post and thank you for spreading awareness X #LGRTstumble

  4. thisscribblermum

    May 29, 2018 at 7:53 am

    This is a really informative post! I know people who have hearing problems and it is good to raise awareness. #lgrtstumble

  5. Sarah | Mummykind

    May 28, 2018 at 11:06 pm

    This is a really interesting post! Really informative and I bet you’ll be raising loads of awareness with this! #LGRTStumble

  6. Pinkiebag

    May 28, 2018 at 6:43 pm

    Hi, thank you for sharing this post hopefully it will stop some the stigma around hearing loss and encourage someone to seek some help #lgrtstumble

  7. Enda Sheppard

    May 28, 2018 at 4:40 pm

    Really fascinating and so well explained … I get the fact that when you have never known anything different it is so hard to adjust to other people’s expectations of what proper hearing is. Sounds like you are well used to it and don’t let it stop you living your life. #LGRTStumble

  8. RaisieBay

    May 28, 2018 at 3:21 pm

    Very interesting read and I’m sorry you suffer from deafness and tinnitus. I have had many a hearing test in my time, the first was in primary school. But I’ve never had more than mild hearing loss from these tests. But, I do have tinnitus which doesn’t bother me unless I’m trying to sleep, or I’m at an indoor swimming pool.

  9. sparksfit

    May 28, 2018 at 2:54 pm

    Thank you for the education today. I was ignorant of much of this. I did relate with you about the ringing in your ears on a different level. At the age of 12 it was discovered that I had a tumor the size of a lemon in the roof of my mouth. Most people don’t understand how I didn’t know it was there. My answer, “I didn’t know how the inside of anyone else’s mouth felt.” Thanks for sharing. laurensparks.net

  10. Modern Gypsy

    May 28, 2018 at 2:28 pm

    I wasn’t aware there were so many different levels of hearing loss. This is a wonderfully informative post!

  11. Spectrum Mum

    May 28, 2018 at 12:35 pm

    Love this post. Thanks for raising awareness and understanding. #LGRTStumble

  12. Bryony - Perfectly Imperfect Mama

    May 28, 2018 at 12:26 pm

    On the positive you can have an excuse to ignore your husband

  13. motherhoodtherealdeal

    May 25, 2018 at 2:38 pm

    I didn’t know there were so many different levels of hearing loss although I suspect I might be on there somewhere as I often find it quite hard to hear what people are saying in one of my ears! Thanks for linking up to #coolmumclub with this. x

  14. Kim Carberry

    May 24, 2018 at 6:06 pm

    It is so interesting to read about the different types of hearing loss.
    My 10 year old was born with partial deafness in one ear which has got worse over the years. She is now completely deaf on one ear but the other is fine. Phew! She copes OK and can hear most things but does struggle if there is background noise going on x

  15. Nim

    May 24, 2018 at 3:30 pm

    This was a really interesting read! I had no idea it was deaf awareness week and am always happy to learn about other people’s experiences of growing up so thank you for sharing!

    I have a congenital eye condition and had a few ‘oooh, that’s a my eyes thing and not an everyone thing’ moments in my late teens and early adulthood so can relate a little!

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