Being diagnosed with a congenital disorder in my 40s

Being diagnosed partially deaf in my 40s

Friday afternoon, 22nd June 2018. 

I went to hospital expecting to have a hearing test and be told i have some scar tissue from a previous nasty ear infection. That that is what is causing a very frustrating amount of hearing loss then be sent home.

Instead i was diagnosed as being partially deaf in both ears and i have lived with it all my life. I am still getting over the shock. I will be getting a pair of hearing aids and everything.

The thing is, it appears to everyone that i can hear just the same as anyone with normal hearing. But i can’t. I sit in groups feeling like an idiot, watching everyone having a conversation above loud music. Across a large table. At a gig. In all sorts of social scenes.  Their mouths would be moving and i would hear most sounds, but not enough to understand what was being said.

I would get so frustrated wondering how everyone could understand each other as i could hear normally. Or so i thought. Whenever i go somewhere that i have to listen for my name or my children’s name being called out, i am filled with anxiety thinking i will miss the appointment as i can never make out the name being called.  The amount of times i have walked away from someone only to be told by one of kiddos that someone was trying to speak to me. Or even worse, when someone speaks to me and i completely hear something else and have a different conversation to them. I get filled with anxiety and dread when i have to speak to someone that doesn’t know me and my upside down back to front words and my squillion “sorry, what was that”

Since my ear infection 18 months ago, i have avoided most social events as i did notice a significant change to my hearing. I did go along to an Ethical brands meetup not long ago. But again, i ended up feeling out of place having not understood half of what was said. I was trying to push myself out of my comfort level. I just ended up feeling worse than the constant feeling of not getting as ahead with my career as i have.

For the most part of the last 18 months i have been told that my hearing would resume. It can take months to get back to normal after such a horrible infection. Finally a doctor listened to my concerns and referred me to a specialist.

I had the hearing test done and then seen the consultant.  I told him i had a feeling that i had hearing loss before the infection, he asked a few questions and then showed me a lil chart of my results. It looked like a squiggly graph to me. But this squiggly graph told him that my hearing loss was congenital. I had lived with this my whole life. He now also wants me to have an MRI scan to check the nerves in my ears.

Looking forward.

I celebrated my 40th birthday the beginning of June. I cannot quite believe i have never thought to ask a doctor about it before i had the ear infection. It really didn’t seem like it was a major problem. If you find yourself stressed out in what would seem a normal situation. Or if you have a niggling health concern that doesn’t seem important enough to bother a doctor with. Just please get it checked. It is better to waste someones time that is getting paid to make sure you are ok, than to live a frustrating 40 years.

I’m looking forward to being able to get on with sorting my hearing out. I am sure it will take a while before i get used to it all though. I am hoping all the feelings of anxiety i have felt over the years will magically switch off when my hearing aids are switched on. But i know that is too much to ask for so i have a pile of books i will be buying on how to deal with it (this one and this one look really good and have been recommended to me) I feel like this is the start of a whole new me..

One thing i am really worried about, what if my kiddos are even louder than what i think they are….

nikki xo


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Photo by Mario Azzi on Unsplash


1 Comment

  1. Zahida Gaibi

    Hi Nikki my daughter has been partially deaf sons baby and most of the time it’s so difficult as her hearing goes down, she has been wearing hearing aids most of her life but never ever gives up and is always happy. Just always be positive don’t worry take life as it comes what is meant for you always has a meaning. My voice has been gone for more than a year I can’t speak at all not speaking to my kids or the doctors or teachers is the hardest thing I have to go through I miss my voice , I pray it comes back.The trick is be positive think of those who are worse than us.I wish you the best Nikki if you ever need a chat I’m a text away.

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