Insight: Do I have an invisible disability? Or do I keep it hidden by not being open about it? (BSL)

I lost my “normal” hearing about four years ago due to Otosclerosis. It happened during the Covid pandemic so it didn’t really impact me that much as socialising and working in the office were not an option.

Life since the reintroduction of my deaf self into the real world has been challenging, stressful and emotional.

Apart from the introduction of hearing aids into my daily routine, no other information on how to deal with my hearing loss was given to me by the professionals. I started to avoid meeting people I knew before my hearing loss for no good reason.

I think I was – and maybe still am – a little afraid or embarrassed of how they will see me now, someone who is a lesser person and in need of sympathy. I hated the fact that I needed others to make allowances for me or change the plans to suit me.

I soon learned, even with Hearing aids, there are things I know I can hear, things I know I can’t hear but there are also things I don’t know I can’t hear. The last statement is the most scary, what am I missing? Am I in danger because I can’t hear?

Do people think I am being rude, ignorant or unfriendly because I don’t hear then talking to me? These thoughts alone stop me from going shopping, enjoying social events and have induced a felling of isolation for me during family events as well.

The most devastating event that my hearing loss impacted me significantly was the death of my mother from lung cancer. On the day of her death I was unable to hear the hospice nurse talk to me and I required my sister to interpret for me. Not being able to hear the nurse explain the situation made a very difficult situation even more distressing.

I think a lot of the issues I feel is the fact that my hearing loss is, to all intent, invisible. I feel I have to tell anyone I come into contact with that I have hearing loss and how best to communicate with me.

Education around deafness and hearing loss in today’s society seems to be poor or nonexistence. Simple things like facing me when they talk to me, understanding that loud environments make everything 10 time worse.

The understanding that there is a whole spectrum of hearing loss ranging from minor to severe, would be a start. I am not (completely) deaf, I can hear, and yes my hearing aids help me to hear you better, but they also help me to hear the air conditioning or background music at the same level as your voice.

I have lost count of the times I have had to explain to someone that hearing aids do not give me back 100% of my hearing – unlike glasses which can pretty much give you back 20/20 vision – they just make things louder, not clearer, so if you are talking to me I may be able to hear you are making a noise but may not be able to recognise what you are saying.

“Sorry” is a word that I have unconsciously inserted in all my conversations. Am I apologising for not hearing what was being said? Or for having hearing loss? Or for just being very British about the whole thing?!

Some conversations start off well but after having informed the other participant that I have hearing loss, they usually turn into the usual “blah blah”, “sorry?”, “BLAH BLAH!”, “Sorry?”

I am guilty of hiding my hearing loss, I only reveal my dark secret when it is necessary so am I making my hearing loss a hidden disability? Am I enabling it to stay hidden with my reluctance to be open about it?

I am not sure what stops me. I suppose the feeling of vulnerability that someone has to help/support me with something so basic and fundamental to human culture. I do have to give in and tell the person I am talking to that I haven’t heard when I can’t keep up with the decoding of what’s been said to me and responding in a expected timeframe.

This is especially embarrassing when I have only been able to keep up with the conversation for 5 minutes or more.

Since my hearing loss I have become more aware of the Hearing loss world. I have searched out Deaf celebrities, web sites, blogs, and I engage in learning BSL and designing humorous T shirts that might avoid me having to explain about my hearing loss.

So, as a person with hearing loss I am not asking society to change to make my life easier, it would just be nice for me not to have to explain how it feels to have hearing loss in a hearing world.

I guess ultimately this is about education around hearing loss. I now see more people with hearing loss on TV which is great and others campaigning to share an understanding of the issues we face.

This blog has been written anonymously as part of the Insight series  where readers are invited to share their story or news about their interesting job with The Limping Chicken. If you have a story to share please email rebecca@rawithey.com

Image courtesy of Pexels.