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In denial about my hearing loss 20 years on... sorry a rant coming on!

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I did post previously about wearing hearing aids, changing to moulds etc., but I just lay awake tonight realising that I am still in denial and cannot really accept that I am severely deaf at the age of 30. I know theres thousands of people who are completely deaf but, I have also realised I have made it worse for myself by not wearing my hearing aids. Not sure if it is too late to kind of get used to re-hearing things again but at the moment I will still be 3 weeks without hearing because I am getting a mould impression done on 20th (I ring every day to check if there is any cancellations before that), then that will take about a week or 2 before I can get them fitted. I have tried wearing my hearing aids with domes but they filled up with alot of moisture and they keep migrating out of my ear… also my hearing loss was not suitable for power domes anyway, according to my audiologist AND people on here but it was because I kept telling them I wanted my hearing aids to be as invisible as possible.

I woke up this morning still feeling quite down. At work, people kept complaining the buzzers was making loud noises but I could not hear a darn thing. They speak to one another and I cannot get what they are saying at all. My education from school (failed all my exams and had to resit again from home) right up to university (which I dropped out of) has suffered because I did not wear my hearing aids.

The main thing that did not encourage me to wear hearing aids was my family members. They did not, at all, tell me I should wear them. They was in denial I think. My teachers did try but everyone in class made fun of me and picked on me because of it, they all stared at me in the canteen, they used to ask me to pronounce words that I was unable to pronounce due to my deafness so it all played a part in it.

I am 30 now and from the moment I left school and grown into an adult, I know I should have grown some balls, stop being stubborn and wear my hearing aids. But I did not. I did not want everyone treating me like a child because I struggled to hear. I am struggling more now, because I still cannot hear the sounds I should hear and I do feel myself declining gradually, ie hearing getting worse, speech recognition is getting worse, I can no longer fill in the gaps where I mishear what half of the conversation is.

I am scared that I am going to get early onset dementia because of it. I am also so isolated and lonely. There is absolutely no groups or anyone near me that have groups for the deaf or hard of hearing. They are all based elsewhere very far.

Sorry for droning on. Just feeling a bit down.

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@craftycrocheter said:

I am scared that I am going to get early onset dementia because of it. I am also so isolated and lonely.

I’m roughly the same age. Why do you think by the age of 30 you’re completely missed the chance of sorting it all out and starting to wear hearing aids again?

Are you waiting on the NHS?

Do you know anyone else who is deaf? I found the isolated got less as some of my friends are also deaf. When I didn’t know anyone deaf, I felt a bit more isolated.

@craftycrocheter said:

My education from school (failed all my exams and had to resit again from home) right up to university (which I dropped out of) has suffered because I did not wear my hearing aids.

I didn’t wear my for 2 years due to bullying at secondary school. Played havoc with my exams. I didn’t go to Uni but have made a life out of what I have.

@craftycrocheter said:

At work, people kept complaining the buzzers was making loud noises but I could not hear a darn thing. They speak to one another and I cannot get what they are saying at all.

Do you know about Access to Work?

Hi Craftycrocheter,

I wouldn’t be too down on yourself. Strictly speaking you are not deaf but hard of hearing. Your loss is mild to profound, but your low/mid frequency loss is pretty much just mild to severe - OK after 2K it becomes profound, which can be helped by technology. But overall your hearing is probably better than mine. You should be able to get hearing aids that will serve you quite well. Put it this way, I have seen a lot of people on this site with this kind of loss who have had aids fitted successfully.

You should be able to wear a (Receiver in canal aid) with your loss using custom moulds - which are very discreet. Unless you are being fitted with a super-power aid. I wear RIC hearing ads and don’t have a lot of hair and they are really invisible. The good news as well is that now is a good time to get hearing aids as they are better than they were 20 years ago. There are a lot of new features with good connectivity to phones etc.

@craftycrocheter said:

I am scared that I am going to get early onset dementia because of it. I am also so isolated and lonely.

Apparently, you’re not scared enough about that hearing-dementia connection, or you’d be wearing your hearing aids. GET OVER IT. I know that sounds like tough love, but your is not even as flatlined in the dead zone as many of our’s here.

You’re still YOUNG, your brain is PLIABLE. You WILL learn to adapt to the sound coming in from hearing aids. You can get a range of colors for your aids and actually use them as a playful accessory!

I can tell you from experience that even if one of your aids isn’t performing as it should, your speech comprehension can drop dramatically in as little as 6 mos. When you can HEAR folks around you, you’ll open up more and the social positives of interaction will improve.

While I did very well with Phonak Marvel aids for years, I’m enjoying a new level of social interaction with the Lumity Life aids cuz I can understand speech better and join in repartee with more confidence.

I am quite surprised at how many weeks you’ve had to wait for your final solution, and feel very bad if that’s the best healthcare you can get. But DO persevere with those new moulds, and if you need to go back for adjustments be persistent, cuz this is the world as you’ll want to hear it.

Wishing you all the positive energy, determination and BALLS you need to lean in to your life. Yes, this is YOUR life. You can whine about it, but you can’t run from it. So own it and do something about it. Keep us posted, cuz I’m hoping you have a good outcome.

Well it’s been 20 years so everything you think you know about hearing loss and hearing aids goes out the window. Have you had an done recently. If so have you picked out new aids. Getting new molds shouldn’t come first. Without sounding crude getting benefits from hearing aids is up to you. Will you wear them everyday. Your brain needs time to adjust. Stop blaming others because they never encouraged you. Ultimately it’s your decision. If you had a hearing test done can you post the results. My apologies if you already posted them. Go slow. Forget the past. The big question is do you want to do this and will you make the effort this time. Remember aids don’t return your hearing to normal. We’re here to help. But slow down.

In reply to @Zebras

Hi. Yes I know about Access to Work. I do not require it in my work place as I work in a healthcare setting, the buzzers are helpful for me to hear in case any of the residents need any assistance.

I have hearing aids with domes on the NHS, but domes are migrating out of my ear and they are not really helping me. My audiologist did mention to me that I really should get moulds but I was dead set against it and said no, I do not want moulds because they are too visible. It is my stupidity and vanity talking, yet again. I also had problems with moulds causing ear irritation in the past (I posted about this on a separate thread), so that did not help.

I truly do want to do something about it now. My confidence is at an all time low.

In reply to @1Bluejay

Thank you. As I live in the UK the NHS are slow, hence why my appt is not until 20th. I am ringing every day to see if there is a cancellation but not having much luck. I understand I should be lucky that I so have SOME hearing, I have seen a few on here and they are a lot worse than mine. It is time to grow a pair! I will do it. I just have to wait now to get moulds fitted and retune my hearing aids again.

In reply to @hass5744

My can be seen underneath my name. I uploaded it when I signed up of this forum. I am still stuck in the “I care what other people think” mode, I never gave them a chance to get used to them either. They get too uncomfortable then I take them out instead of perservering. I am terrible.

You ain’t terrible @craftycrocheter, perhaps sensitive is more appropriate? Coming to terms with hearing loss is extremely difficult, the realisation hits you hard emotionally, depression can rear it’s ugly head, your confidence can nosedive, and you can become reclusive… But, I speak with hindsight, and let’s face it, we all have degrees in that… We can dig a hole for ourselves, and surround ourselves with self pity, and wallow in it! I did all of that for a few years, until the penny dropped, the only person who could help me, was myself, and once that dawns on you, the only way is up… You have to man the feuk up, and basically take control of your life… Learn sign language, go to lip reading classes, it’s fun, and you get the opportunity to make a complete fool of yourself in front of the whole class :upside_down_face: but it breeds confidence into you, and you are with likeminded souls, whom understand! You will make lifelong friends whom you can relate too, and empathise with you, because they are the same as you, “Hard of Hearing”, seek them out on social media… They ain’t hard to find, approximately 1 in 7 of the population has some form of hearing loss! Arm yourself with the tools of communication & communication tactics, you may go profoundly deaf, but you can still communicate fairly effectively, so be prepared… Lastly, throw any delusions of being vain out the window, everybody who knows you, are acutely aware you are deaf, and trying to hide it, you are pi$$ing into the wind… My apologies for being so blunt! Good Luck, cheers Kev :wink:

In reply to @craftycrocheter

@craftycrocheter said:

domes are migrating out of my ear and they are not really helping me. My audiologist did mention to me that I really should get moulds but I was dead set against it and said no, I do not want moulds because they are too visible. It is my stupidity and vanity talking, yet again. I also had problems with moulds causing ear irritation in the past

OK. I can share my experiences on both counts here, too! 1.) Domes OR custom moulds will typically migrate out of one’s ear due to articulation of the mouth (speech, eating, laughing, yawning, LIVING). The skeleton mould is probably going to provide the best “seat” for your aids, but they are definitely more visible.

2.) I have also had bad reactions to anything but the flesh-colored plastic mould in my ear. Pink-tinted plastic or even custom softer clear silicone moulds caused itching, burning and in 2 cases otitis. Luckily, the smoke-topaz colored silicone power domes do NOT cause a reaction, but … they slip out of my ears alllllllll day long. I’m constantly pushing them back in like I push my glasses up my nose. Ack. A nuisance I can easily live with.

I think you can compromise. If you get some humongous mould that screams “30-something with AIDS!” then don’t take it. If you can hear well with silicone domes that you push in your ears 100 times a day, maybe consider that route?

And like I said before, you are young enough that you can wear black, royal blue, white, hey whatever color mould you can get IF you aren’t allergic to the material. I think you’ve got one leg over the fence now … so just JUMP! Get the aids. Wear them. It’s okay to have a physical condition that requires an “aid”. We are lucky to have so many excellent choices out there - assuming your healthcare insurance gives you a choice?

I’d LOVE a pair of screamin’ red , but Phonak only makes them in staid BMW colors.

You’ll be fine man, your audigram is not as bad as you think and will change everything!

You have a severe to profound loss. The only one you’re fooling is yourself. Friends and family are well aware that you have a hearing loss whether they mention it or not. But. And it’s a big but , if you are not going to accept the fact that you need aids. If you’re not going to wear your aids all the time so you can adapt to them. If you’re going to allow your vanity to decide for you whether you’re going to wear your aids or not, then you’re set up for another failure. I’m not unsympathetic. We all go through this to a certain degree. But you definitely need a more positive attitude if you are going to succeed. Also remember, especially with your loss. Hearing aids help. They don’t fix. There will still be areas where you will struggle. But a positive attitude and accepting the fact that you need to wear aids will go a long way to making this a success story. I’ve been wearing hearing aids since my mid 20s. I’m now 70. I rarely get questioned about my hearing aids. But it’s who I am. Maybe it’s also my age. With your loss you’re missing more than you realize. Usually the person with the loss is the last to realize. But if you’re going to worry about what others think I’m afraid you’re set up for failure. Don’t let others determine the quality of life you can enjoy because you’re worried what they might think. We’re here to support you.

You are on the path to acceptance for sure - just the act of sharing your challenges here is a big step in the right direction. It truly helped me to have this community and some hearing loss Facebook groups. It helped me realize how many are out there facing similar challenges. Helped me accept it as part of life - my life - and, I didn’t need to EVER apologize for having hearing loss. Part of your journey could involve owning this loss - being out front with it with people - getting that are the best option for you, no matter how big or noticeable. It shows you care about yourself and care about your interactions with others enough to hear them better. Knowing you are doing your part to help yourself can empower you to be OK with asking those around you for assistance or repetition when you need it. My prediction, having three kids about your age, is that your friends will be joining you in hearing loss a lot sooner than they think due to the impact of ear buds. You can do this.

Ear molds would be a good idea. Do you plan on fighting this every step of the way. If so then what’s the point?

No but misinforming is.

Mild to profound is the correct term.

Having a severe to profound loss means they’ll unlikely (unless they use sign) to be able to function without hearing aids etc.

I do understand how isolating this must be for you. A lot of it depends on family/friend support or being determined. It sounds like you now have the determination to move forwards and are being proactive in chasing up your appointments which takes courage. Please don’t be hard on yourself, it’s so hard to seek help when you have trouble with communication but you have crossed the biggest hurdle in asking for help. As others have said, there are lots of options with technology and support groups. Take it one day at a time and try emailing the RNID who will be happy to advise. What matters here is how your hearing loss is restricting you and how to enable you to communicate with others and be happier. There is so much ear tech around now that hearing aids blend in a lot more. Getting some hearing technology that works well for you will be key. Remember it will take time, it’s disorientating and challenging at times but then things start to make sense. Try keeping a journal of how your aids perform so that you can feed this back at follow up appointments. There are lots of options with fit & technology to make this work for you. Your age is a big positive in helping you to adapt & find your best way forward. Keep going one day at a time and things will get better for you.

Whether it’s mild profound or severe profound is irrelevant. The op needs convincing that he should get aids. He’s hung up in different issues that a lot of us have dealt with in the past. The op admits he has a hearing problem and needs reassurance. Let’s try not to let this thread go off the deep end. Let’s try to help this individual. That’s what this forum is about. The severity of his loss is irrelevant. He needs convincing that aids aren’t the end of the world.

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