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

986 replies

flamingo40 · 04/09/2021 17:45

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

OP posts:
Thread gallery
27
BobsBurgersisthebest · 12/09/2021 08:59

I have two siblings who are partially deaf (from birth) and both can 100% lip read. You mentioned in your post about it taking you 5 years to embrace your hearing aids and that is a big thing to do. My sister- who is in her 30s, still hadn't fully embraced her.

What made me sad recently was that she had to go to a walk in doctors. Didn't wear her hearing aids and cannot lip read with people wearing masks. She'd missed her name being called. She waited 3hours, all because she didn't want to tell them she was deaf. From that, I understand it's a big deal to embrace being deaf.

My sister still doesn't tell people she's deaf because I guess its the fear of people judging her.

HalleLouja · 12/09/2021 09:07

I always make a joke of it. Tell people that I am deaf in one ear. If they want to say anything nice stay on my good ear but anything mean stay on my bad side.

I have been like this from childhood and always tell people. Especially when they are wearing masks and I can’t hear them.

purpleme12 · 12/09/2021 09:22

Wow didn't she go up and say something after a while?

repeatplease · 12/09/2021 09:36

I try to get hold of any patient notes and write I am Deaf on the folder - you will need to wave when you call my name. Doesnt always work - still sit there hoping that my feeling that if no one else stands up it may be me theyre shouting for on overdrive!

Soubriquet · 12/09/2021 09:57

It’s sad some people see shame in being deaf

I don’t know any different so to me, being deaf is just normal

I’m lucky I was able to learn to speak before losing my hearing so I don’t have that “slur” that some people have.

Weefreelassie2 · 12/09/2021 11:31

For itchy ears from wearing ear moulds, there's a spray available both off and on prescription called " Ear Calm "

It works ! Smile

purpleme12 · 12/09/2021 11:41

I've tried ear calm before
In fact when I rang the doctor when I had the usual infection flare up to get Otomize again he said for me to get ear calm and try that for 5 days before trying anything else (he hadn't seen my ear this was over the phone)
I did cos I had to and the problem was still there after and I rang back and got the Otomize in the end
I resented spending the money on it

purpleme12 · 12/09/2021 11:41

It doesn't work for me

peridito · 12/09/2021 12:48

When talking to someone and it becomes obvious that I can't hear, I just smile ,say "I'm a bit deaf" and gesture towards my ears.

TheSparkling · 12/09/2021 14:52

It is has been so lovely reading through this thread and not feeling so isolated (also feeling a little sad for the struggles that some of you have had)

I lost the hearing in my left ear overnight about 10 years ago due to a viral infection. The hearing has never returned, thankfully my right ear is ok but it makes lots of situations very difficult. Initially I was given a hearing aid for that ear but it made no difference as the nerve had been damaged. I then spent quite a few years just trying to cope really, I attended a lip reading class but I was the youngest there by about 30 years I only went once.
About 3 years ago I was getting so frustrated and about to start a new job that I went back to my GP and was again referred to audiology. More hearing tests and a chat with the audiologist led to me being given so cRos aids where the sound is routed from the deaf side to the hearing side. I wore these for about a year before giving up on them because although they helped in some situations they made things more difficult in others. I know my poor hearing makes life difficult for my family and friends but they are all pretty good at supporting me now.

I am more upfront about my hearing loss with new people. When it was national deaf week earlier this year I put a thing on my facebook telling people about my situation. It did help a little.

I think the thing that really annoys me is that people assume wearing aids magically fixes your hearing! But they don't work like a pair of glasses that correct your vision. It really frustrates me that I can't hear conversation with and without my aids if its a noisy environment but somehow its made out to be my fault. I really really struggle with people wearing masks now and now I am a bit older I do say to people that my hearing is really poor and please could they move the mask. I am more upfront about it now than ever before.

BobsBurgersisthebest · 12/09/2021 16:08

@purpleme12
She doesn't like to tell people she's deaf. She doesn't want anyone to treat her differently. She was messaging me and evidently getting upset, so I forced her to go over and let them know she was still waiting. Then she told them she was deaf.

Before the pandemic/masks, she would just lip read.

Sunflower101 · 12/09/2021 17:58

Hi everybody, can I join? I hope mumsnet approve for us to have our own area on here. I have two hearing aids and I just wouldn’t be able to function without them. I have used them since I was about 4 years old, had grommets and my tonsils removed. I am a 1970 s child. I was so scared I would be made to wear those hearing aid boxes around my chest. Fortunately I wasn’t and now use Bluetooth hearing aids that I bought privately. I have about 90/95 % hearing loss and have the strongest aids you can buy. I have many tales I could tell, the prejudice has made me cry, withdraw and sad but I’m in a better place now and doing a job I love.

flamingo40 · 12/09/2021 18:27

Can I just say thank you all for replying.
I was nervous about posting this thread. That's why I originally popped in in 30days only.
I never expected to get so many replies.
If one little post out of desperation to find people who understand can lead to our own area then wow thank you all for joining.
In the meantime if this just gives people support , advice and stops us feeling isolated then that's great too

OP posts:
HildegardNightingale · 12/09/2021 19:00

I have bilateral hearing loss and wear 2 behind the ear aids. I also work 12 hour shifts in the nhs. I also wear glasses and have small ears!! I found the attached a big help when wearing masks. It doesn’t knock your hearing aids out!

Thread for those of us that are deaf/hard of hearing?
orinocowho · 12/09/2021 19:25

Hi can I join in?

Bilateral moderate loss, came on after a series of infections 4 years ago and had hearing aids for about 18m. I would not be without them!

I have low frequency loss which means I can hear a conversation is going on, but unfortunately my brain makes up the bits it doesn't hear making things very confusing! For example, I heard "ducks" instead of "plugs", "fins" instead of "bins", and "danced" instead of "passed".

The NHS (well Specsavers acting on behalf of the NHS) told me that the hearing aids that they could prescribe would not help low frequency hearing loss, they would just make everything louder which would be annoying at the high tones. I ended up desperate at an independent audiologist, who said he would try, gave me a pair for free until I was happy enough with the results to pay for them, and I went back weekly for about three months for them to be adjusted. I've got Unitron hearing aids and although they cost me £1600, including all after care (check ups every three
months and wax removal when needed) I feel it's well worth it. I get tinnitus as well and although I have to put up with a gentle hiss from the hearing aids, it's easier to ignore than the tinnitus was!

supadupapupascupa · 12/09/2021 22:58

Can this thread be moved to chat seeing as it's proving to be popular?

supadupapupascupa · 12/09/2021 22:58

Oh I see it has Grin

sylbunny · 13/09/2021 08:08

Hi I have moderate to severe loss in one ear. It came on suddenly when I was 26 and it's suspected it was viral damage to nerves. I used to wear a hearing aid for a few years but they changed the flange thing that went in my ear and it started to hurt so I got out of the habit of wearing it! I now get by with lots of what's pardons and can you repeat thats with some lip reading thrown in. Covid has made this very difficult!

Has anyone had any luck getting aids abs tests through private insurance?

Mumoblue · 13/09/2021 08:14

I’ve been hesitant to post because I don’t wear hearing aids, even though I do have hearing loss.
I went to the doctors a few times to have my hearing tested but I keep getting told it’s not bad enough yet to have hearing aids.

I always feel like I’m not deaf enough to call myself properly hard of hearing but I’m not hearing enough to have it not impact my life. I grew up calling myself hearing-impaired but apparently some people find that offensive?

The masks and screens during the pandemic really made me realise how reliant on lip reading I am to boost my understanding on what people are saying.

peridito · 13/09/2021 08:36

normal hearing aids only amplify in the areas you already can hear -

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

is the first of these remarks the case ? But if so ,how does transferring from poor hearing ear to good one work ?Or is the answer different HAs ?

The NHS (well Specsavers acting on behalf of the NHS) told me that the hearing aids that they could prescribe would not help low frequency hearing loss, they would just make everything louder which would be annoying at the high tones and were Specsavers right ?

I feel so confused ! .

If @Cafog could come back that would be great - though I wouldn't if I were her because there are so many things on this thread that could do with input from a professional that it would take all day .Plus it seems that there is a lot of variation between trusts .

But lots of really knowledgeable users on here so perhaps they can help me !

NameChangeEightMillion · 13/09/2021 08:55

I'm a parent of deaf DC,not a deaf adult but I just wanted to post to mention the things that have helped my DC with masks. My DS works with the general public and wore a lanyard/badge like the attached - they came from Etsy. I know not everyone is comfortable with lanyards/badges etc but for those that are, there are lots of different designs/styles and they really helped my DC (whose problem is not that they are deaf, but that some of the general public are ignorant and impatient knobs!)

Masks did make it more difficult for them, we used BSL a lot more, and perfected a fuck off look to anyone judging if I took my mask off so they could lip read. My DC are now young adults who have been profoundly deaf since birth (genetic) so in some ways we think it's "easier"'for them than those that lost their hearing later in life and I really feel for people in that situation. It can still be very isolating and lonely though even for my DC who are confident about their deafness.

We all learnt BSL when they were babies (again it was a lot easier for them learning as a language from scratch as DC, than for us as adults) and it has been invaluable. One wears brightly coloured BTE phonak aids (and they used to have pictures on their ear moulds etc, one had minecroft pictures!). One has also chosen to have a cochlear implant and it has helped enormously but it was a huge decision to make. Everything is Bluetooth which makes such a huge difference (all of this is NHS funded, they have been amazing in our area, as has the education system. Unlike the DWP but that's another thread! They also get concessionary travel passes (but the threshold is high in our area, speech has to be affected too).

The changes in technology and streaming to phones etc has transformed all our lives. I remember when my first DC was diagnosed - the hearing test was someone sitting behind DC shaking a rattle to see if they responded! We were involved in the rolling out of the newborn screening etc and lots of things with the NDCS. So their experience has been much more positive but of course it is very challenging at times (social v medical model of disability etc). My DCs speech has obviously been affected and people do judge on this, if they don't know realise they are deaf, they assume they have other SN/learning disabilities and default to patronising them and talking to them like they are very very stupid. Infuriating.

We were previously unaware of any deafness in our families but again, both DH and I had older relatives that were labelled as thick or lazy but these days probably would have been detected as being deaf.

I hope it's OK to post as I know
It can be annoying when someone actually isn't in that position themselves but wanted to show the lanyards etc, and say thank you as this has been very informative to me. Thanks to those struggling, it can be very isolating and challenging. If people and society in general, were more aware and patient, I'm sure lives would be a lot easier.

Thread for those of us that are deaf/hard of hearing?
Thread for those of us that are deaf/hard of hearing?
BellsaRinging · 13/09/2021 09:48

Thanks for this thread OP...Great to hear from other deaf/HOH people. Like @Mumoblue I struggle with feeling 'not HOH enough.'l I have one HA atm, but need to go back for a re-assessment/bi-lateral. I don't find they help much, though-maybe a bit in the upper register.

I really struggled during Covid with masks and became a bit depressed. I don't usually tell people that I'm HOH but have started to do so more, partly because of masks and partly because it's becoming more difficult to hear (hence needing a review!).

MossyBottom · 13/09/2021 11:03

Can this thread be moved to chat seeing as it's proving to be popular?
Chat threads are not permanent.@flamingo40 what do you think about asking MN to move it to General Health? It could run and run and have a new thread linked to this one when it filled up?

@orinocowho £1600 sounds quite reasonable if it includes maintenance and wax removal (I pay £50 about 3 times a year just for that). How long does that cover?

orinocowho · 13/09/2021 11:11

@peridito Were Specsavers right? I don't know, it could be that they couldn't supply NHS hearing aids to help me, but my independent audiologist has, through sheer determination and weekly visits until we got it right. I also have an app that I can slightly adjust them, so I can turn them down if needed.

@MossyBottom £1600 for two hearing aids and aftercare for four years. After then I can pay again and get a new pair, or just pay for the aftercare if they're still ok.

CalmConfident · 13/09/2021 11:27

Hello everyone, new to the thread.

Recently confirmed I am struggling with some of my lower range hearing. High frequency is fine. I have no problems on phone or video….but struggling in group settings or background noise. Find the DS harder to hear once their voices broke.

Got my follow on appointment today to discuss options…need to sort out before return to the office really gets started!