Thread for those of us that are deaf/hard of hearing?

[flamingo40]

I've looked through the health topics and can't find any particular areas for those of us who are deaf or hard of hearing to turn to if we are after advice or just fancy a chat with people who are in the same situation?
I guess I'm asking firstly if I'm missing something or secondly if there isn't an area we can go to would this be something Mumsnet would think about adding?

Having been hard of hearing for years and now a permanent hearing aid wearer I'd love you get help and advice and talk about experiences to other people

I am completely deaf in my left ear since birth (mum had rubella when pregnant with me) fortunately my right ear works well.

I find the extra processing my brain has to do, especially in noisy environments really tiring and it actually seems to be getting more exhausting the older I get too.

Sadly (and especially when I was younger in teens and early twenties) people can often assume I’m either ignorant or stuck up, so I always tell people that I am hard of hearing and to not take it personally if it seems like I’ve blanked them or answered a question with something completely random as it means I haven’t heard them at all or correctly. Despite being honest and open about it, some people just really don’t get it, or if they do get it they forget because it’s not visible or obvious. This often makes me feel like I’m always on the outskirts of things, I’m never really properly in but rather hanging around on the periphery.

I’d love it if hearing aides were any use but sadly as my cochlea is dead (according to doctors) there is no point. Funnily enough this reminds me of the kids at school screaming in my ear or whispering things into it to see if I really was deaf 🙄 and adults are much better with the Sorry What? Or Pardon me? Joke when you explain your deaf 🙄 it’s not funny and wasn’t funny the first time when the first person did it, forget it being amusing the hundredth time it’s just bloody annoying not to mention extremely rude. Oh gosh I’ve accidentally ranted 🙈 sorry.

Anyway glad to have found others that understand

Rant away!
I try to use humour but it gets tiring after everybody thinks they're the first to say it

I would like to join
I never really think of myself as heard of hearing but I guess I am actually. I think I never thought of myself that way because I only started wearing hearing aids at about 22 or something. Although it wasn't because I all of a sudden needed them, I think that actually I've always had hearing loss
I remember in primary school having a hearing test as they though something might be wrong. But mum said I wasn't playing ball with it!
I've got phonak ones through NHS
In fact I just had another hearing test as I need to upgrade to the new phonak ones as mine aren't being made anymore. I asked her, out of curiosity, what my hearing was like. She said it was moderate. I was quite surprised. I guess cos it's just normal to me

Someone mentioned earlier that lip reading classes really helped her
I never knew you could do this!
Where have you found these??

Does anyone use that t link thing?
I switched it on on my hearing aids when we went to Cadbury world as it said it had t link but it didn't seem to make much difference to me?

Hiya. NHS audiologist here. Won't intrude on your thread too much but just wanted to say Bluetooth aids ARE available on the NHS. Have no idea about other durisdictions and I know some sites have been slow to train their staff. They aren't fitted routinely however if you ask for them you shouldn't be denied. There may be a wait though.

I also recommend connevans.co.uk. Showcases lots of different equipment compatible with various NHS aids. You may need your audiologist's support to get connected up. But an example for a pp would be a microphone that your excercise instructor could use on their clothes and their voice could stream directly to your aids. The website itself offers lots of technical support and a 24 day money back no quibble guarantee if you're unhappy.

@purpleme12

Does anyone use that t link thing? I switched it on on my hearing aids when we went to Cadbury world as it said it had t link but it didn't seem to make much difference to me?

I tried when I first got my aids but it didn't make much different. Now my loss is moderate, I tried the loop a couple of weeks ago and it worked great!

They said mine is moderate
Unless the t link wasn't working or something? No idea

I hope it works cos they should be getting a t link headset for me to use at work now

I have a hearing aid for my worse affected ear (moderate loss of unknown cause)
It's made all the difference for specific situations but I find the noise pick up quite overwhelming so don't wear it generally.
I have struggled during covid when trying to understand what people are saying when wearing a mask. Not long ago there was a public transport problem and I couldn't make out what was being said over the tannoy.
When I finally found someone to ask, explaining I have hearing loss, she made me wait for ages.
I never know what to say to people. I don't like saying I'm hard of hearing as it feels so old-fashioned. If I say I'm deaf, it is often taken as a jokey remark. And saying I have hearing loss feels awkward too!
What do others say, to be taken seriously?

@themuttsnutts I also struggle a lot with accents and get incredibly embarrassed by it.

Good thread.
I have had reduced hearing since having measles as a child but it got worse as I reached 60, nothing like as bad as so many on this thread.
I have moderate low frequency hearing loss which means I can hear women's voices quite clearly but deep male voices less so.
It reached a point where I realised I could barely hear a fraction of what DS (25)said and it was quite upsetting.
So I got tested and got hearing aids.
They make a massive difference. I'd love some Bluetooth ones but it's not the purchase so much as the maintenance that puts me off.

Deafness runs in the family. My sister has severe hearing loss, parents and grandparents all deaf in old age.

@FindingMeno

I know. So do I. I always feel as if I am making out their English isn't good enough or that I'm snobby and only listen when it's The Queen's English

Oooo I’ll have to contact my audiologist and enquire about it

I have severe hearing loss but I don’t use the T-link

It isn’t active on my current hearing aid because I never really used it

When I was in school, I used to have a box that streamed what the teacher said straight to my hearing aid

[quote themuttsnutts]@FindingMeno

I know. So do I. I always feel as if I am making out their English isn't good enough or that I'm snobby and only listen when it's The Queen's English[/quote]
Same here 😂

I am totally deaf in one ear due to nerve damage and have lost hearing in the other ear.

I have some really clever NHS hearing aids which transfer the sound from my bad ear side to my better ear. They have made a massive difference.

My hearing loss happened when I was a child so I am used to telling people I am deaf. My DH seems to like to talk to me from a different room, as he seems to forget. 🤦🏽‍♀️

I have hearing loss too but not full, only partial. I have been advised by the consultant that a hearing aid is unlikely to help me.

I frequently mishear certain sounds in words and can't differentiate between similar sounds for example p, s, f (think phonetically).

I am always saying - can you say that again please and it can be repeated multiple times and I still can't get it. My children despair and get very frustrated with me and think I'm not listening.

I've gone through life thinking I'm not very smart (42) but maybe my hearing has affected me for longer than I realise and before I was officially diagnosed.

I've had a MRI which was luckily clear.

I also suffer with Tinitus.

Thanks for starting this thread OP.

I have hearing loss in one ear so I wear a single hearing aid. I've been partially deaf since childhood and it's thought to be from contracting measles at age 3. My hearing aid is an Oticon which I haven't seen mentioned here yet. As far as I know the different NHS trusts are each assigned a hearing aid manufacturer and usually only buy that brand. After I moved house, my old hearing aid broke and my audiologist said she couldn't repair it because they weren't allowed to buy from that manufacturer so couldn't get spare parts. She had to give me a new hearing aid instead which wasn't as good as my old one.

My DH is deaf in one ear as well so we spend a lot of time saying What? to each other! He's deaf in the same side as me so we can't even sit with our good ears next to each other. Apparently I talk to myself a lot which he finds immensely frustrating as he can't tell whether I'm talking to him or myself.

@HalleLouja your hearing aids sound like they would be really useful to me as one ear has normal hearing so transferring the sound from my bad side would probably work really well. Can I ask what brand/type they are?

@purpleme12 your audiologist has to enable the T-link on your hearing aids. I had an online lip reading class with Sarah Groves of Sussex Community Lipreading during lockdown but she didn't have enough people sign up to run a regular online class. It's a shame as I found the one class I did very useful in understanding just how much lipreading would help me. I have enough hearing to usually know when someone is talking to me but I can't make out their words so being able to lipread would make social conversation much easier for me.

Yes they have turned it on
If I'd known about this lip reading class I might have joined

I think that was part of the problem. Lipreading classes were usually done in person so Sarah had trouble getting the word out about her online classes. Only two people attended her free trial. It was really good as you could look directly at her face while she was talking and she did things like put up written text with missing words so you could watch her talking silently and work out the missing words both from the shape of her mouth and from context.

Me too. The only one I found was American and on YouTube. I forget what it was called now. Americans are much easier to lipread anyway so probably not much help for British English

@halfhope

I'm hard of hearing with two NHS digital hearing aids - would love a section dealing with hearing loss 😊

And me! For those who work my company has just bought me a set of Bose noise reducing headphones and they are a game changer! Working in an open plan office and making phone calls was very difficult because my hearing aids pick up all the external noise, not any more! I am going to have to grit my teeth though and explain to colleagues I lip read quite a bit so speaking to me with your face half hidden by a screen isn't helpful, but it is a bit embarrassing. Brilliant thread and yes please to a HoH section.

Hello there, such a good idea, thank you for starting this thread. I have been partially deaf/HoH since measles at 4, now 47 and I've lost a lot more hearing in the last few years to the point I know I can't even try to pull off engaging in a 'hearing' way. My hearing loss was never really explored as a child, all hearing tests said I was better lip reading without HA. I hate HA, find them distressing, they drive me to a highly anxious state and only confuse & startle me. I think as a adult I've totally neglected this aspect of myself but as it worsens I know I need to try again and be my own advocate - I advocate for so many other people it's hilarious I don't include myself. I've definitely put my own needs to one side and need to address that.

I will go through this thread with a pen & paper, I have many questions. I actually always wanted whoever was talking to me to have a microphone, I didn't actually know this was a possibility. I find that people often have a wrong impression of me because what is initially visible to them are my efforts to hear/engage and the seriousness or concentration that entails. That's not only socially but about how you are perceived as a parent or whatever. I've found the whole mask thing quite liberating because I can't engage, don't need to try. There have been many, many people though who even when I've told them I lipread just keep talking to me through their mask. I'm now at the point where after a few attempts I just keep saying, 'I'm still deaf', 'still deaf', until we can both move on.

Thank you all for sharing. I will be back.

Won't this thread go after 30 days?

I was thinking that. Have contacted hq

Hi all, as we don't want this thread to disappear in 30 days, we are going to move it over to chat for you now