I have a friend who has recently suffered sudden hearing loss similar to mine. She was already a hearing aid user with mild to moderate hearing loss in both ears. Reading her email telling me what happened brought it all back to me about my own sudden deafness a year earlier.
Like me, she wasn’t given a high dose of steroids and, like me, she’s been told the loss is permanent. Also, like me, she’s gone straight back to work. Now I for one really struggled with this – not just in terms of the impact of deafness on my ability to do certain aspects of my job (such as using the telephone) – but also in terms of the psychological impact of suddenly being deaf whilst trying to give the appearance of ‘normality’. I found it a huge strain to be putting on a brave face as well as trying to overcome communication difficulties, do my job and cope with a disability.
My friend has a ‘frontline’ customer service role so, the increased deafness was bound to impact on her job. I advised her to be kind to herself; to take time off work – time to adjust.
Regardless of what others might think about someone with a hearing loss becoming more deaf – it is a really big deal. It’s not like just needing a stronger prescription for glasses; something to ‘just get on with’ or something you should ‘take in your stride’. It is your worst fear coming true. And, when it happened to me, I just didn’t know how I would cope if it turned out to be permanent.
My friend had her hearing aid turned up and went back to work but immediately started experiencing difficulties with communication. In endeavouring to get on and do her job to the best of her abilities, she told me that she had taken the decision to wear her hair up at work so that customers could see she was wearing hearing aids. She did so, I think, in the hope that they would be more understanding and adjust the way they communicated with her. (As someone who has always covered up her own hearing aids, I thought this was a very brave move and I really admired her for taking this bold step.)
Now, prior to 2011, I had always thought of my deafness as something very personal; something to be kept secret. My sudden total hearing loss in my ‘good’ ear, however, forced me into a position where I needed to start all conversations with, “I’m sorry: I’m deaf,” so that put paid to the notion of ‘privacy’ – but still I didn’t like the idea of having my hearing aids ‘on show’.
So, yesterday, I took what I felt was a huge step: I went to the supermarket with my hair fastened up and my CROS aids on show. To me, this was a really big deal. I felt quite nervous but I wanted to show some solidarity to my friend.
As we approached the entrance to the supermarket, I said to my husband that I was surprised he hadn’t commented on the fact that I’d gone out of the house with my hair up. He said he hadn’t noticed and didn’t realise I thought it was a big deal.
After we’d done the shopping, he asked me how it had felt. Do you know, I didn’t feel at all ‘exposed’ (which is kind of how I’d expected to feel). In fact, once inside the store, I never gave it a thought until I got to the till. Perhaps it wasn’t such a big deal after all.
I’d love to know what you feel about other people seeing your hearing aids – or knowing that you’re deaf. Does it bother you that people know? How have people reacted to you when they know?
I once had someone say to me, “Oh, you don’t LOOK deaf.” What are you supposed to say to that?
Perhaps the answer is to show them your hearing aids.
Angie is journalist, food and travel writer, photographer and co-founder of #Yorkshirehour on Twitter – as well as having a full-time job in local government. She’s also a wife, chicken-keeper, gardener, foodie and WI member, living in Glorious Yorkshire. Angie started going deaf in one ear at the age of 30, then suffered total sudden onset hearing loss in her ‘good’ ear in 2011. Her husband and her chickens keep her sane – or as close as she’s gonna get! You can check out her website, blog, twitter account, Facebook and Linked In.
The Limping Chicken is supported by Deaf media company Remark!, training and consultancy Deafworks, provider of sign language services Deaf Umbrella, the National Deaf Children’s Society’s Look, Smile Chat campaign, and the National Theatre’s captioned plays.
cochlearimplantHELP
June 14, 2012
I felt exactly the same growing up with hearing aids and hiding them under my hair. If my hair had been cut a bit short around the ears so the aids peeked out, I would have crowds of children standing around me laughing and pointing (I kid ye not).
Now I have 2 cochlear implants, and I feel it’s no longer a stigma, probably because I am so happy I can actually hear properly, that I don’t care if I’m wearing a striped zebra on my head and I don’t care who sees either. It’s liberating and so so different from hearing aids.
barakta
June 14, 2012
I’m very open about being deaf, possibly because I was ‘the only deaf kid’ in my school for most of my school life. I am severely deaf and while I hear people I know reasonably well I can’t understand strangers or people who don’t give me a pre-amble before speaking.
I have always had non standard hearing aids an alice band bone conduction aid then BAHAs so they don’t trigger the “Oh hearing aids” reaction in most people. My partner is one of the few people who noticed my BAHA and guessed it was a cochlea implant (CI) which isn’t that far off.
I have been told I don’t look deaf many times. Also that I don’t sound deaf – as a common misconception is how we sound reflects much at all!
I’ve also had people accuse me of my hearing aid being one of those bluetooth headsets and that I am ignoring them or being rude. Sometimes they simply refuse to accept that it is a hearing aid – which makes them look stupid.
In many ways I have difficulty getting people to believe and remember that I am deaf – I’m increasingly in people’s faces about it really!
Aspinall Ink
June 15, 2012
Thanks for sharing your experiences with me. It’s been great for me to meet up with the colleague (now good friend) I mentioned in this post and talk about our experiences. I don’t know any other hearing aid users to chat with and have always felt funny talking about hearing aids with hearing people. Isn’t Limping Chicken a great place for sharing? Love it!
C.J
June 17, 2012
I had Cochlear Implant, but had to have it removed, so I havent got a choice of showing hearing aids or Cochlear Implant, there isnt any,so Totally Deaf nothing in ears what so ever, Ear Canals been skin grafted over, I mean, no point anyone Looking in, there isnt anything to see..
Is it hard to deal with ? Yes, has life changed? Yes….
I hardly speak now as im told my voice is distorted and loud….Life changes and ive got to try and soldier on…
Aspinall Ink
July 13, 2012
CJ. I can’t magine whatyou’ve been through. Have you contacted Hearing Link? They offer support to people who have become deafened. http://www.hearinglink.org. Hope they can offer you some support. Take care.
Krista
September 28, 2012
I just read your most recent post and started looking through these older ones. 2011 was a bad year for me too though I was not fortunate enough to get chickens!! I went from a decade of moderate loss in both ears, doing pretty well with aids to a sudden (overnight) loss in my good ear resulting in one deaf ear and the other with a severe loss. They did put me on a strong course of steroids, and injected some straight into my inner ear, but besides being painful and making me physically wonky for six weeks, it did no good. I now have a BAHA on my deaf side but find that my CROS works better, and a BTE aid in my “good” ear. I wish I’d found you sooner because I’ve been going through all the same grief/loss/coping and trying to get on with life.
I was 27 when I got my first aids and I’m always wearing a ponytail. Partly that’s because I have 3 young children and NO time to worry about how I look! Partly because I’m not in a professional environment. I was actually looking forward to having a BTE aid because my in canal aids were not quite keeping up with my needs. My experience has been that people just don’t notice them. I sometimes point them out to help explain, as in, “I’m deaf, I can’t hear you well, see: hearing aids!” I guess I always looked at the aids people were wearing 15 years ago (large and that horrible shade that doesn’t match anyone’s color!) and figured the new ones are so tiny and awesomely powerful by comparison that I’m lucky. My BAHA is kind of large and clunky and if I ever end up with a CI I might have a pause over vanity. But if it meant I could hear again, without working so hard for it, I’d do it tomorrow.
I also go to cafes and take my aids out. I sometimes stay home while hubby goes to church with the kids and have a ‘no aids’ morning to putter around the house and not have to be constantly alert. I can’t hear the pastor anyway. There’s something extremely refreshing about giving my ears and brain a break.
I’ve really enjoyed your posts, and can’t wait to click over and see your blog! I’d love to connect with you via email if you’re interested in another pen pal.
I think next Spring we’ll defy the “no chickens” rule in our neighborhood and get some anyway.
Aspinall Ink
October 4, 2012
Hi Krista
Thanks for leaving a comment – and wow – what a comment… You sound like you’ve really had a tough time.
I’m really sorry the steroids didn’t work for you. I spent the best part of a year feeling angry because I wasn’t given them – but perhaps they wouldn’t have helped me in the end either… I wish they would have worked for you.
Someone I saw on NHS wanted to fit me with a BAHA but I’d done my research on the Internet and read about bi CROS aids so wanted to try the first. So I went private. I’m so glad I did: they have given me my life back, really and truly they have. I’d become a recluse for months + became totally reliant on my husband to help me with communication. With the CROS aids I’ve managed to regain a lot of confidence.
Have you heard of the charity Hearing Link? Check out their website – there’s a lot of useful information on there. They also run intensive residential courses to help people – and their families – to adjust to severe hearing loss.
Go for it with the chickens! They’re such lovely pets. Although, did you see my post about getting a dog? She’s even better than the chickens!
Are you on Twitter? That’s the best way to connect with me. http://twitter.com/Aspinall_Ink
Thank you for your lovely message.
Hope to hear from you again!
Angie
Tamara
January 22, 2013
Hi Angie,
After years of hearing problems I was eventually told at the age of 18 that I needed to wear hearing aids. I was devastated and ever since I have been trying to keep them secret and concealed from public view – I can’t even wear my hair up in front of my friends! I greatly admire the confidence you write about here; going into a supermarket with your aids on show and taking that leap of “I accept my hearing aids and you should too”. Maybe one day I will have the same fearlessness to do the same, but until then I will look up to individuals like you and your friend who have learned to just get on with it. I just hope I don’t experience the sudden loss of hearing, though. That scares me.
Aspinall Ink
January 23, 2013
Hi Tamara. Thank you for posting your comment. Georgie and I aren’t fearless! (Would that we were!) I still choose to wear my hair down most of the time, but I feel fine now about going out with my hair up if I feel like having a different hairstyle. I do finally feel able to tell strangers I have hearing loss and that makes my life much easier.
You’ve taken a big step by posting this comment. Good for you! In time, and through connecting with others who have hearing aids, we all might think differently about having them ‘on show’. One way to try would be to have your aids on show with just one friend and see how they react… But only when you feel ready to do that.
Do you know about Hearing Link? It’s a charity which helps people with hearing loss and their families. They can help you connect with other people with hearing loss. Check out the website: http://www.hearinglink.org There’s a Facebook page and they’re on Twitter: http://www.twitter.com/hearinglink. Membership is only a few pounds. And, if you like writing, you could ask about becoming one of the bloggers. I’d love to see your writing on there!
If you’re on Twitter, you can follow me http://twitter.com/aspinallink and I now have an account just for all things related to hearing loss- http://www.twitter.com/Angie_HL.
Please don’t waste energy on worrying about sudden deafness. Please use all your energy on making the most of every day!
Thanks again for sharing!
Angie