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

Craftycrocheter, do you still have your HAs in your possession, while waiting for the ear molds to be made? If so, then I suggest giving this a try: wear the HAs without domes or molds. The domes may have been causing an allergic reaction, right? Well, it may feel a bit wonky to have that tube inside your ear without anything around it, but at least it would help your hearing somewhat, and you’d also find out whether the absence of domes eliminates the moisture buildup. Give it a try for part of a day at least. My understanding is that it won’t hurt the HAs, and as long as you are not shoving it in farther than usual it shouldn’t hurt your ear, either. I have RIC style HAs and I have worn them without domes a couple of times; it didn’t cause any harm and my hearing was helped almost as much as with domes.

BTW, I understand how the kids making fun of you has colored your perception regarding wearing HAs and how people perceive you. I want to reassure you that adults of your age have pretty much outgrown those immature, juvenile behaviors and attitudes; they now are more conscious of the social and legal importance of treating people who have disabilities with respect and decency. Whether it’s thick glasses (I was wearing bottle-bottom-thick lenses for nearly all of my life, until recent surgery) or hearing devices or walking canes, adults want to be far more understanding and considerate than you may realize.

Sure, at your age you want to impress folks with your looks and all that, but hey, life is what it is and you just have to make the best of it. Better to have some gizmos around the ears than, say, permanent scarring from some accident, so count your blessings! Honestly, most people don’t notice or, if they do, just don’t give a flip about whether anyone’s wearing HAs; they are appliances just like eyeglasses or teeth braces.

One thing I learned over time was, if I acted like everything about my appearance was normal, people treated me as normal. If I’d acted all self-conscious as if I knew I looked like a freak, I would only have been harming myself. (BTW, when I ordered my new More1 set a couple weeks ago, I actually asked if RED was an option! It wasn’t. )

HI @craftycrocheter, you’d messaged me when I first appeared on here and commented that our hearing loss was similar. I think our experiences are similar in many ways, although I have a few more years on the clock than you!!

30 is an odd age. We feel like we should be mature and ready to take on the world, when in reality, life is just starting. Others have said this, and I wholeheartedly agree, that it’s NEVER too late to start. Do remember that some of your fears (dementia, inability to adjust) are also fed my HA manufacturer marketing - they use these messages to help sell HAs. There’s likely truth in there, but not as clear cut as they make it appear. (I worked in pharmaceutical communications for years… there’s always truth, but the nuance is often missing.) The dementia message is one reason I’m back trying aids again now, but I think the issue is so much more complex than it’s made out to be.

I share so many of your experiences - struggling through education, etc. My 20s weren’t actually a fun place for me in many ways, particularly in the workplace. Hearing fatigue played a huge part in my social isolation, I now recognize, and HAs probably would have helped with that.

Let me know if you’d like to chat more offline (not sure if that’s allowed on here) - I’d be happy to chat to someone else at a similar stage in the HA journey.

Finally, if I may be bold given my relative newness on this forum, I do think that when someone posts that they feel a bit down, that’s not the time to nitpick on the language they use or the descriptions they post. Our feelings around our hearing loss are entirely subjective to us, I believe, and so one person’s “severe” loss might feel the same to them as someone else’s “mild” loss. Audiograms don’t convey the lives we lead and we’re more than a set of numbers on a graph…

Anyway, not sure if anything I’ve written helps you @craftycrocheter, but I wanted to offer a virtual hug and a well done for taking those first steps. You’re doing something important for you.

Just realised I repeated a lot of this, in a more verbose manner!! I agree with you…

Don’t listen to any claims from manufacturers. They sell hearing aids. Look at commercials on TV. They’re claims are ridiculous. Also remember that similar hearing loss on an audiogram doesn’t mean similar loss in real life. Also if you still have aids from 20 years ago they are way out of date technically speaking. I’ve said this before and I’ll say it again. Who cares what anyone thinks. And I agree with the comments that most people don’t see my bte aids and my hair is short. I wish they did see them. It would save me from having to explain my loss. Or even worse when I respond to something and my response makes no sense and I get that dumbfounded look.

Hi everyone. I know I have not replied to any of your comments individually but please believe me when I say that I have read through every single one and they all have helped me immensely and gave me the kick up the backside that I quite frankly needed. My husband does it daily (telling me to wear my hearing aids), but with him I have selective hearing… as he does with me lol

An update since I last posted, I began wearing my hearing aids the moment I woke up until I went to bed, this morning I have not got them in as my ear canels feel quite sore. The issue I am currently having is my ears getting itchy and they are pushing themselves out of my ear, causing them to whistle. I do not realise until my husband tells me my aids are whistling. Also noticed speech clarity is not very good either, peoples voices sound quite distorted, so I hope that is something they would be able to fix.

I cannot wait until 20th to get moulds fitted cos from experience they will fit . I have been ringing every day to see if there is a cancellation but no luck so it is literally a waiting game now.

Thanks everyone x

You are very welcome @craftycrocheter… I must apologise again though, for some reason, I thought you where a man! Now, I find out you are a lady… In retrospect, I wouldn’t have been so blunt! With your reference to itchy ear canals, you may be allergic to silicone? Acrylic moulds, can solve this, or hypoallergenic moulds, so speak to your audiologist at your appointment, and ask them about allergic reactions to moulds…I am allergic to silicone, my ears swell up, itching, and weeping, it’s a real PITA… I used a steroid ear spray called Otomize, very sparingly! But, nowadays I don’t really have that problem, avoiding silicone solved the problem, on a very rare occasion, I get a flare up for whatever reason, a couple of sprays, and the itching is gone within a couple of days… Your audiologist should be able to make the correct adjustments, once you have a good set of moulds, and hopefully rectify the distortion. Good luck at your appointment, best wishes Kev

There is a product you can buy online called miracell. It gets rid of itchy ears. You can find it on Amazon. A little goes a long way… Of more concern is the sore ears. Wearing aids should never make your ears sore. And continuing to wear them could make the ears excruciatingly painful. If you have new molds and they make your ears sore then the molds don’t fit properly and you should go back and complain. My concern here is that the soreness will give you an excuse to give up on your aids again. Hearing aids or molds should never cause soreness. They should fit comfortably and pain free.

Well at the beginning you don’t have to wear them all day abd torture yourself with loud notice. But you should wear them as much as you can. After a couple of weeks you should see your audiologist again to get them readjusted because your brain has adapted to the louder input and toned things down. Which is why after a couple of weeks when you take out the aids you’ll swear what hearing you had has gotten worse. Which it hasn’t

You can also buy water based ‘personal’ lubricant to help the ear mold slide into place and not irritate your ear canals. I have to use this in the winter months as it gets very dry here. If I don’t use it the ear canal gets irritated and swells, and pushed the molds out of my ear and gives the feed back you described. So try the lubricant, don’t use too much but it really helps.

@pageskipro said:

water based ‘personal’ lubricant

I may try that with my double domes. How does it affect any tendency to walk out of the ear canal?

I feel your frustration. I have a similar loss and have been wearing hearing aids since age 6, and I’m 67 now. I’ll offer a few suggestions based on my experiences:

1. Work with audiologists, but don’t take what anyone says as gospel. I can’t emphasize this enough. What works in the lab is sometimes hell in real-life. My audi recommended a large aid with mold. I’m fimewith a small RIC and power dome.
2. Keep careful notes for discussions with your audi and move to aids with self or remote programming capabilities.
3. Focus on hearing better in your most common situations. Don’t expect to hear everything in all situations.
4. Supplement your hearing with other visual cues, such as lip-reading.
5. Explain your loss to co-workers. They will be happy to converse with you, for example, from a short distance as opposed to across the room.
6. Maintain your aids with common sense. For example, leave them outside the room as you enjoy a nice steamy bath or shower.

All the best!

Hi everyone. Thank you again for your replies. I have been wearing my hearing aids consistently and so far the only sound that is annoying me is the ruffling and scrunching paper.

Unfortunately I have currently what LOOKS like otitis inside of my ear as a result of wearing domes, I imagine. I was keeping inside my ear and the domes clean every day… so why is it happening? My ears are very sore. I am dreading getting earmould impressions done on Monday and whether or not I will be able to wear those. I am enjoying wearing my aids, but inside my ears are really not handling this at all.

I am getting really frustrated now I will consider them products you have shown me.

You have to use your own judgement, but if your ears are inflamed and sore, I’d stop wearing the hearing aids until you see your audiologist, Hopefully the inflammation will go down and they can do the impressions for the molds. The soreness could be irritation or allergy or??

I have no idea but I have had this problem ever since I have been fitted with hearing aids years ago. They done so many mould impressions, silcone to acrylic to, what they told me was hypoallergenic. It is getting on my nerves. I will talk to them on Monday at my appt. It cannot come soon enough let me tell you!