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

Thank you @MossyBottom My kids are also not that patient with me not hearing them. I do love subtitles on TV. Why there're not usually on Catch Up is so annoying.

I find it's very rare they're not on catch up
Vast majority of programmes I've watched on catch up have subtitles option

I use BAHAs! They are fantastic. I am very deaf without them, but once I clip them on my hearing is almost normal. I read about them online and went to my gp to ask for a referral. Within 3 months I'd had the surgery, and had them fitted. Surgery was done as a day case, the op took about 30 mins, under general anaesthetic. I was so nervous beforehand, but it went so smoothly. When you wake up there is a plastic disc covering the implant. They shave a 50p size piece of hair off in order to do the op, and the disc covers that area. You can't wash your hair for 7 days till your follow up appointment (this was my experience in Newcastle), then at the follow up they remove the disc and clean the area,then test it to check the implant has 'taken' and is firmly in place. Then you see the audiologist and they fit your BAHA! I had no pain at all after surgery, it was amazing. And the relief when I could finally wash my hair!

Sorry, don't know how to address individual people, but someone asked if you can use a BAHA with hearing in one ear. Yes you can. I am almost totally deaf in one ear, but can manage fine with a BAHA on the other side. Although I do actually have bilateral BAHAs. Occasionally I will leave one off. An example is visiting the dentist. Depending on the position your head is in, you can find the BAHA gets in the way during treatment, so if I'm having a filling for example, I'll leave my BAHA off on the side being treated so I can turn my head easier iyswim. I can still hear fine with just the one. The sound travels through your skull via the implant, to your auditory nerve, instead going through the bones in your ear.

I wasn’t “deaf enough” for BAHA’s but too deaf for a normal hearing aid

So I tick on by with my normal hearing aid and just get on with my own long learned tips.

Things I’ve had that have helped

Vibrating alarm clock
Vibrating baby alarm
Vibrating and flashing fire alarm
T-loop box that connects to my hearing aid to talk direct to it from the teacher

Subtitles on films and tv are a massive help. If it doesn’t have subtitles, I don’t bother watching

MossyBottom my chemist recommended Diprobase Itchy Ears for itchy ears. It's very mild so you don't have to worry about it damaging the thin skin of the ear but it relieves the itchiness immediately.

@soubriquet oh the vibrating baby alarms are fab! I use one for when we have our baby grandson over. I'd be stuck without it!

Same!

If for some reason, it wasn’t working, I would have to set up a travel cot in the bedroom which wasn’t ideal

But they are a life saver

Ooh, please may I join in ? Also add my vote for our own " part" of Mumsnet.
The thing is, loss of or lack of hearing is recognised as being responsible for isolation, loss of confidence and depression unsurprisingly . A place where we can share and bent etc where we are all on a level playing field would be wonderful.

My story is very similar to @Electrickery , my parents were embarrassed by having an " imperfect" child , though responsible for my hearing loss by refusing the Measles vaccine

It wasn't picked up on until.I went to.school, yet they still refused me hearing aids . I am completely deaf in my right ear, and have 25% hearing in my left. I wear what I think is called a bi cross system, a microphone in my deaf ear and a hearing aid in my left. The difference is amazing, but not perfect by any means !

Over the years I've lost the little confidence I had, and though I am.a self taught lipreader, social interactions are very very hard and I can feel quite crushed. I don't work now because of other disabilities.
The pandemic and mask.wearing has left me pretty much a hermit now because of zero confidence .

My right ear for some reason gets itchy every so often. Not so much my left!
Then I have to use that Otomize
It's a pain
Last time I still had some left from the previous time so just used that which I don't think you're officially meant to do cos it contains antibiotics

@purpleme12 Otomise is magic but my GP won't give it because it contains antibiotics and what I really need is hydrocortisone. I use a bit of 1% hydrocortisone cream every couple of weeks and diprobase in between for eczema in ears.

Hi I'm new to MN and glad I've found this thread. I have bilateral moderate loss and have had hearing aids for about six months. They think I've had progressive loss all my life due to childhood illness but it only got picked up recently I'm late 30s.

@Weefreelassie2

Ooh, please may I join in ? Also add my vote for our own " part" of Mumsnet. The thing is, loss of or lack of hearing is recognised as being responsible for isolation, loss of confidence and depression unsurprisingly . A place where we can share and bent etc where we are all on a level playing field would be wonderful.

My story is very similar to @Electrickery , my parents were embarrassed by having an " imperfect" child , though responsible for my hearing loss by refusing the Measles vaccine

It wasn't picked up on until.I went to.school, yet they still refused me hearing aids . I am completely deaf in my right ear, and have 25% hearing in my left. I wear what I think is called a bi cross system, a microphone in my deaf ear and a hearing aid in my left. The difference is amazing, but not perfect by any means !

Over the years I've lost the little confidence I had, and though I am.a self taught lipreader, social interactions are very very hard and I can feel quite crushed. I don't work now because of other disabilities.
The pandemic and mask.wearing has left me pretty much a hermit now because of zero confidence .

I was actually left feeling a sense of shame about it.

I was never even aware of BSL, lip reading courses or any communication devices. It was very much, 'Don't admit anything; don't complain. Just cope.'

My parents were the same with everything. Born in the 1930s.

@Soubriquet

I wasn’t “deaf enough” for BAHA’s but too deaf for a normal hearing aid

So I tick on by with my normal hearing aid and just get on with my own long learned tips.

Things I’ve had that have helped

Vibrating alarm clock
Vibrating baby alarm
Vibrating and flashing fire alarm
T-loop box that connects to my hearing aid to talk direct to it from the teacher

Subtitles on films and tv are a massive help. If it doesn’t have subtitles, I don’t bother watching

yes to the subtitles! Wish the cinema did more subtitled screenings. I recently bought a TV listener so I can watch TV without subtitles but it doesn't fit in our TV completely waste of money it was £100!!!

Hi, can I please join?

I have hearing loss in both ears and moderate tinnitus. I have hearing aids, but rarely wear them at the moment because covid and working at home. I am so happy most people have stopped wearing masks, I discovered during covid that I actually lip read without realising. Masks made life difficult.

I find I’m ok on one 2 one conservation, but really struggle in crowds especially with noisy backgrounds.

Unlike other disabilities, why is it ok to mock those of us who are deaf/hard of hearing. Every time I’ve ever told anyone, they always respond with a ‘What?’ Or ‘Pardon?’. Ha ha. So funny. Thinking about it, that’s probably another reason why I rarely wear my aids.

My own older brother used to call me 'Deafy' as an insult and other children did it at school.

It taught me the lesson, Don't Tell.

That's so sad 😞

It is, isn't it? I think there's a lot of 'older' people like me who just coped, managed, thinking silently to ourselves, 'I'm not stupid, I'm deaf'.

The stories I could tell.

I’ve started telling my colleagues about my hearing loss. I mentioned up thread that I don’t yet have a diagnoses.

I’ve found everyone to be sympathetic apart from the one person who wears hearing aids! A lot of “oh yeah- you think you’re deaf”. I don’t think- I am! She even berated me for not hearing the phone the other day.

I’ve found most of my friends and family to be okay. It’s the awkward misunderstandings I can’t stand. Like when I get home later and realise I was having a completely different conversation from the rest of the group for a while.

Can I ask how you have brought it up with colleagues, I've been diagnosed about 6 months and have started telling people but not sure how to phrase it. "I'm deaf" feels not quite right as people assume profound deafness "hard of hearing" makes me sound a bit old. Any advice?

It depends in what situation. With people I work with everyday I just started saying “sorry I can’t hear you- I’ve been back and forward to GP/ENT with this as I’ve been suffering problems with my ears recently!” Most people kind of made a “ahh that makes sense” face and never really got any prying questions.

With people I don’t know as well I usually say “I have a slight hearing impairment”. Like you- I don’t feel Deaf or hard or hearing and I find this to be the phrase that suits me best.

@Electrickery "I was actually left feeling a sense of shame about it.

I was never even aware of BSL, lip reading courses or any communication devices. It was very much, 'Don't admit anything; don't complain. Just cope.'

"My parents were the same with everything. Born in the 1930s.
My own older brother used to call me 'Deafy' as an insult and other children did it at school.

It taught me the lesson, Don't Tell."

It's uncanny how similar our experiences are ! The name calling and sense of shame especially. I've always felt lesser and unworthy than everyone else as a result.

@StuntNun

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.

Its a Phonak hearing aid and I love mine.

@Weedsorwishes

Can I ask how you have brought it up with colleagues, I've been diagnosed about 6 months and have started telling people but not sure how to phrase it. "I'm deaf" feels not quite right as people assume profound deafness "hard of hearing" makes me sound a bit old. Any advice?

I'm around 40. I say either I'm partially deaf or I have a hearing impairment.

I tell people fairly early on. I don't want anyone thinking I'm rude if they think I'm ignoring them but really I just haven't heard, or I've heard 60% of what they did and it takes me a little too long to put the pieces together of what I did hear to work out what was said. If that makes sense!

It's so lovely to read all the stories of other adults who are in a similar position! As a Teacher of the Deaf I'm surrounded by d/Deaf pupils all day but not adults!

I started learning BSL when I found out I needed aids with a mild loss. I've always been interested but it was a catalyst. Now my hearing loss is worse, I wonder if I may need to use it myself one day. But ridiculous it's not treated as a language in this country; I was doing some online training recently and underneath the video it had a great long list of all the languages that you could add subtitles in. Yet there wasn't a BSL version. It makes me mad sometimes!

I think it's difficult sometimes knowing how to explain your hearing loss with people,
I used to be embarrassed of it and hid my hearing aids.
It's taken me about 5 years to totally embrace them and now I've had short hair, they've visible and I don't care.
Having said that yesterday a few of the ladies from my work out class had no idea? They hadn't seen them!
I often say im hard of hearing so I may not catch what you say first time. I do tell them I wear hearing aids but explain I still struggle at times.
I will in group scenarios now say to a few people can you help me if I don't hear.
Yes people forget at times but on a whole everyone is willing to help.
I do know that lots of us still find it hard asking for help or telling people, I found with time I got more open to it