Hello all,

I am a student, currently studying at the University of Leeds, doing a design project on experiencing music for people with hearing loss. I would really like to gain a deeper understanding of the experiences of the people within this community. If you have 5 minutes spare, it would really be appreciated if you could fill in a quick survey (mostly multiple choice, with bulk ethics approval from the university).

Thank you and have a nice day! 

See link here :)

2.5 years, several doctor visits. Everybody says mu hearing is normal, but it is NOT. I'm 21 y.o Male.

I have constant tinnitus on my left ear, and tinnitus that comes and goes on my right ear. I think I damaged my ears with headphones, high volume. I can cope with tinnitus, I'd say, but my right ear hears much lesser than my left one. I have to balance it by lowering left side with equalizer apps. Somewhere between 7-10dB helps. I've been doing this for past 2 years. But when doctors check my hearing with special equipment, they can not find the underlying issue, they even say I shouldn't have tinnitus. I cleaned my ears multiple times, went to ENTs, went to audiologists. What should I do now? I don't have any idea, I'm afraid right side will get even worse, completely deaf If I don't take any cautions. What do you suggest? What would be the cause? Thanks in advance.

So many my classes require talking with teammates and I can’t hear them at all in big hall with all the other people talking. Such situations make me feel so stupid and I developed a habit of skipping classes :/ What do I do :(

Hello! i am hard of hearing. Sometimes my hearing goes out, and i cant really understand what someone is saying to me even if standing next to me. My hearing tests come back for the most part normal, yet i dont understand why i cant hear. ive had multiple surgeries done to correct my hearing. All of which backfired and only made my hearing worse.

So now im struggling, i can barley hear and highschool is terrible. I have so many peers trying to talk to me, but i feel so rude when i keep going. " huh? Huh? What? " over and over no matter how loud they get. I want to wear a pin that says hard of hearing, simply so that people can understand that im not ignoring them or being stubborn, i just simply cant hear. Would it be wrong? Im not offically dignosed with anything yet, but i am hard of hearing.

Hello guys my hearing teat results show betwen 10-25 my doctor say your hearing is normal But i see some people here in reddit says above 20 is consider hering loss So guys does my hearing is normal ?

Hi all. I hope this is an appropriate place to pose this question. I am attending a sold-out concert soon with another HoH individual and 2 others. We requested an interpreter for the show, but we just found out today that they are only relocating me and the other HoH girl, not the whole party.

Can they do this? I understand that it’s a sold-out show, but aren’t they under an obligation to relocate up to 3 companions to contiguous seats, or at least move the others in the party as close to us as possible?

It’s rather frustrating as I feel like if we had separately requested accommodations, we each would have been granted a companion.

I’ve never had this happen before and don’t know how to proceed.

Edited for clarity in P2

Hey everyone! I’m curious about which social media platform you find the most accessible and easy to use. Some platforms have great captioning features, while others are harder to navigate for those of us who are deaf or hard of hearing.

For me, Instagram has been pretty good with captions on stories, but sometimes I find YouTube’s auto-captions can be hit or miss. How about you? Do you have a favorite platform that makes accessibility easier, or maybe one that still has a long way to go?

Let’s compare experiences and maybe find some hidden gems! 😊

Yeah, so basically I’ve been HoH for 15+ years and I just got this test in August and I’m curious what it means because the lady basically shoved me out the door after my test. I’ve been wearing hearing aids a long time so 🤷🏼‍♀️

Hey all,

I live in Canada and am wondering if anyone has been able to successfully claim disability tax credit on their tax returns. I applied for it this year but got rejected as it was deemed my hearing loss (severe to profound) is not detrimental enough to my daily life… however as I’m sure all of you know hearing loss comes with invisible nuances that affects our everyday interactions, even though it’s hard to objectively quantify.

I can appeal the rejection, but was wondering if it’s worth going down this rabbit hole or if anyone else has had a similar experience.

Thanks!

Any benefit doing this 2,5 months after acoustic trauma? Have no hearing loss according to test but feels harder to hear, with tinnitus and fullness in ears. Have had trouble with fullness and tinnitus before so feel anxious and regretful now.

Appreciate all advice. Thanks.

I know my hearing is barely (if at all) considered HOH, so I hope it's okay to post here. Not necessarily struggling with any of the "loss," rather I'm hoping to find help with fighting the tinnitus that I'm dealing with.

Also I'm hoping someone can help me decipher exactly what I'm looking at with these charts.

Thanks in advance!

I have single sided hearing loss and I read somewhere that Apple Airpods can double as hearing aids. I was wondering if more brands are offering these since I do not use Apple myself. Boomer question: what is the technical name of these kind of earbuds I have to look for?

shit dude i totally understand it and im not upset at people who tell me to tone it down but its just humiliating. most of my life i havent been able to control my volume properly because i thought i was speaking at the right level. recently ive lost more of my hearing and of course things are worse socially than before. i cant hear myself speak clearly anymore and im still told to shut up and im so embarrassed man

I have severe to mild hearing loss in both ears. It's bilateral and asymmetrical. My most pronounced hearing loss is in the lower frequencies, but the highest frequencies are dim, too. I wear hearing aids in both ears.

Music has always been important to me. I played the flute, guitar, vibraphone, and keyboards when I was younger. In my teens, radio was far more important to me than TV, and I loved wearing headphones in the dark to explore the stations. In college, I took singing lessons. As an adult, I invested in the highest quality speakers and headphones I could afford. Then chronic tinnitus caused constant roaring, like standing near a powerful waterfall, and my hearing began to fade. I knew I was losing lower frequencies when I had to pump up the bass just to hear it. I was devastated when my ENT and audiologist confirmed that I wasn't imagining things. I was hard of hearing.

Ever since then, I have been totally fixated on music, even more than before. I devote every moment I reasonably can to deep diving into the discographies and live performances of my favorite artists. I explore Spotify and YouTube, looking for anything I might have missed in my youth and upcoming artists alike. I have even started collecting books about musical artists and digging through online libraries for archived magazine articles. I want to hear everything. I want to know everything. I want to experience as much music as I can as deeply as I can before it's taken from me. It guts me to know I can't hear music the same way as people with full hearing, and never will again. How long before it's gone?

When I pause to think about this behavior, I feel silly. I publicly embrace my identity as Hard of Hearing, yet I obsess over an art form that is designed specifically for a hearing world. Can anyone else relate?

We're a tiny team of 2 that is trying to make smart glasses for people with hearing loss - but ones that are ACTUALLY USEFUL for the d/Deaf & HoH community! You can see them at www.aircaps.com

We've personally tried almost every single smart glasses product over the course of years (XRAI, Xander, HearView, Leion, Epson, Sony, etc.). What we've realized is that these devices have so much potential for the hearing loss community, but the people developing them usually don't think deeply about how to make them actually useful for d/Deaf & HoH users. They don't involve the community in the design process - most are just adapting existing general consumer products for this use case, rather than designing the product from the ground up with d/Deaf & HoH needs in mind.

We wanted to do something because of personal experiences with family members and close friends. So we decided to develop a product that makes some tradeoffs on the "general consumer" front, but is actually tailored for the people who will use it.

Based on talking to over 500 people in the community across 5 different countries (and our own experiences trying out glasses in Broadway & movie theaters and tech conferences), here's what we thought was the priority:

1. Designed by the DHH community, for the DHH community (outsider "technologists" will never know what the lived experience is like)
2. Full, unfiltered, and truly equal access. This means accuracy as CLOSE to 100% (95% as claimed by many companies is not going to cut it). Also, no censoring (this is what HearView does), or other filtering.
3. Comfort, comfort, comfort. The Sony and Epson glasses on Broadway & in movie theaters are UNBEARABLE. Same with XReal glasses. We couldn't wear them for more than 10 minutes without headaches, pain around the nose, behind the ear. So we made a tradeoff - our glasses max out at 36 grams because comfort is paramount, rather than packing in high-res screens for gaming.
4. Aesthetically appealing (aka, no "glasshole" appearance). We're not saying that people should "hide" their assistive technology (we actually think the opposite). But at the same time, that doesn't mean you should look like a complete dork when wearing a clunky headset (just look at pictures of the XRAI One glasses or the Leion Hey glasses and you'll know what we mean). We’ve had a few users say AirCaps look like designer glasses. 
5. Convenience. You shouldn't have to go out of your way to use a product that gives you equal access. That means no dealing with cables connected to your phone & draining your phone's battery like the XReal glasses. That also means having a battery life of more than 2 hours - our glasses last the entire day so you don't have to constantly recharge. This also means being able to use the product when you don’t have an internet connection - we have both an online and offline mode for captions
6. Specific features tailored to the use-case. No other product to our knowledge has real-time speaker separation - we can do this. Not only that, you can register voice profiles for each person you speak to based on just 10 seconds of audio and it will recognize and label that speaker. And, you can hide your own speech so you don't see redundant captions of what you are saying (unless you want that!). And you know how every speech recognition software messes up on proper nouns, names and technical terminology? Well, you can add custom vocabulary to our speech recognition to make sure it correctly recognizes these words. How did we know to add this stuff? We actually TALKED to DHH people in the community and asked them how they would design the product!
7. Complete privacy. We don’t store audio, transcriptions, or any other personal information ANYWHERE. The audio is immediately discarded after transcription, and you can’t export conversation transcripts. We care about your privacy. And if you think that’s not a big deal, HearView explicitly says in their Privacy Policy that they have the right to sell your information without informing you :)

We're happy to answer literally any question you have. We are also doing live video demos (you can book one on our website). We would love to hear comments about other products / this product / what you think about smart glasses in general - and we're super open to feedback, so if you think we're missing something important, please don't hesitate to tell us!

You can check out demo videos (through the lens) on our website as well as what others who have tried it have said about it. And feel free to DM us or email us (aircaps@aircaps.com)!

TLDR: We're creating subtitle smart glasses specifically for the DHH community, co-designed with input from 500+ people, focusing on high accuracy, comfort, subtle style, convenience, and unique features like multi-speaker identification and custom vocab - features the community actually wants.

Hi everyone! I’m a medical student in the Pennsylvania area and my school is hosting a patient panel on living with medical devices, looking for someone to speak about hearing aids (I cannot because I don’t necessarily want my whole school to know about my disability). DM if interested! It’s next month on a weekday evening.

Edit:

The panel is in Philadelphia and will be on November 20th (the possibility exists of being present via Zoom). It is a standalone event run by medical students where medical students will be attending to learn more about how to care for and the experiences of people who use medical devices such as hearing aids, g-tubes, continuous glucose monitors, etc.

I apologize for any lack of clarity - I often forget not everyone knows what a patient panel is, and I rather thought anyone with a passing interest might DM me for more details.

I have worn HAs for 6 years, I bought AirPods Pro back in September when I heard about the hearing aid feature, because it means I can go to work with both headphones and hearing aids. (My HAs are really bad for streaming audio.)

iOS 18.1 released today and I got the hearing aid feature set up right away. So far, it's weird. My HAs are RitE, so it's definitely a different experience. I'm going to wear them often in the coming days to try to get accustomed to them as HAs.

Anyone else in a similar situation? How are you finding it?

I'm sharing a few a new workshop I'm leading starting in November, for anyone interested.

Introducing Lipreading Strategies with a Group Focus, a 3 hour workshop coming up in November! Just in time for the upcoming holiday gatherings. Let's learn how to set the stage for better communication outcomes this holiday season. A good portion of lipreading is self advocacy, strategies a knowing when to use technology.

There are two options. Take your pick.

November 9th 2:00 - 5:00 PM Mountain time or November 16th 11:00 AM - 2:00 PM Mountain time. (Adjust for your time zone.)

Lipreading strategies work for everyone. With some hearing, some lipreading and different strategy options and you've got lipreading. I'll throw in some suggestions for when lipreading doesn't work too. Not everyone is lipreadable.

https://hearinglosslive.com/register-for-classes/

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#Lipreading #Speechreading #HearingLoss #HardOfHearing #HearingImpaired #CommunicationStrategies #CommunicationSkills

hi all! i recently had my third tympanoplasty surgery after having 4 sets of tubes in my ears in my younger years. i went in for my first post op appointment a few weeks ago and was told there was still a perforation in my eardrum, and went in for my second post op appointment today and was told that the original hole had healed but there was a new one that had formed. my doctor recommended doing a eustachian tube balloon surgery, and i was just wondering if anyone here had any experience with that procedure? i was told it was about a 70% success rate, but don’t have the highest of hopes based on my previous experiences. the doctor also said that it might help increase the success of having another tympanoplasty if i do the balloon procedure. i will be asking my doctor some more questions, but was just curious if anyone here has had similar experiences, or any advice about things that worked for you! thanks!

I've been hard of hearing my entire life, and was completely deaf in kindergarten until a month before my fifth birthday. I also have auditory processing disorder and am selectively mute, both are probably linked to my autism.

All this leads to me having a very hard time when it comes to verbal communication. Especially when there's even just a bit of background noise, I can't understand spoken language at all anymore. At home this isn't much of a problem, since I live with four other people who have very similar issues.

But when I'm out and I notice someone is trying to talk to me, I panic every time. I usually can't understand them the first, second, or third time and it feels so awful asking a stranger to repeat themselves over and over again.

I had a situation like this on Saturday again. I was standing in line in a grocery store and at some point noticed the man behind me was talking to me. I could understand only very little of what he said and was also unable to speak on my own at that moment. So I just looked at him, pointed at my ear and shook my head.

When people I only know online ask me to voice chat with me or send me voice messages, unless I've known them for a long time and trust them, I usually say "I'm sorry, I'm deaf" since I am so embarrassed about the details of my hearing loss and other related issues. It's easier to get the point of "I won't understand you" across like this, than list the reasons and possibly come across as attention seeking or pity seeking or exaggerating.

I feel kinda shitty for it, like it's somewhat unfair to people who are actually considered deaf on paper. Is this wrong, should I stop? What should I do instead? I'm kinda at loss.

(posting this on two subs because it's kinda weighing me down a lot)

Hey everyone! I’ve been thinking about how using ASL (or any sign language) in public spaces can feel a little different from speaking out loud, especially if people around us start watching. For me, I feel proud to sign, but I know sometimes it can draw attention, which can feel a bit awkward.

How do you feel about it? Do you feel comfortable signing in public, or do you sometimes prefer other ways to communicate? I’d love to hear your experiences—do you have any tips for handling curious looks or even questions from people?

Let’s talk about how we all handle signing in public spaces! 😊

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I'm kind of down in the dumps right now. I know people get frustrated at having to basically yell at me to hear what they say after two or three times, where I can at least get them to look at me and I can do my "learned on the job" lip reading.

I had a boss not too long ago (3-4 years the job paid shit anyway) just go off on me because she was so mad I couldn't understand when she mumbled. It made me feel like I was doing something wrong. I hate this impairment so much...

Has anyone ever had where their ears go blocked but u can unblock them straight away. My ears keep popping and i just have to press my ear or like tug on my neck and they unpop, but it's annoying cause im basically like holding that side of my face to stop it from keep popping. It does it a lot at night too. It happens every so often, it will go on for a week and then it won't happen for months and my ears will be fine. I don't understand what it is and it's so annoying. I once had my ears cleared out and now I look in my ear with camera and flashlight and I can sometimes see wax but sometimes not. I haven't used earbuds for years as I'm scared of wax going deeper into my ear but then l'm also confused about how to clean my ears. Please anyone advice

Hello all!

I have Meniere’s Syndrome. A rare inner ear disorder that causes very loud tinnitus, feeling of the ears being full (they are not, it’s the Cochlea), hearing loss, and very severe vertigo.

Long story short, I ended up on a medical regime that has all but eliminated vertigo and most of the bad symptoms! Yay! My Meniere’s seems to (for now) be more advanced in one ear that has lost about 40% hearing while the other has been more mild and had lost basically nothing.

Anyways, because of years and years of treatment that required intra and transatlantic shots and ear tubes, my ear drums developed some holes that would not close. Being that I don’t need steroid shots anymore, my ear doctor and I agreed to have a double Tympanoplasty to close up my ear drums holes. The idea was not that hearing would improve much, but at least being normalcy, prevent infections, allow for swimming, etc.

I had my tympanoplasty 3 days ago…. And I can’t hear any outside noise. At all! Maybe if someone screams super loud next to me I hear a little, but for all accounts all outside noises are muted! It’s driving me crazy. My wife called the doctors office twice and they say it’s the “packing” they put in my ears and that it will get better. Was that everyone’s experience too? I CAN hear my own voice very well and I hear chewing and swallowing and other internal sounds from my body. But I cannot hear almost ANYTHING from the outside.

Normal?

Looking to see what others who had the surgery went through.

As per title, have noticed that my hearing has gotten quite a bit worse over the past few months. I have experienced a "stuffy" sensation and it feels like I am shouting when raising my voice and speaking at a "normal" volume.

Hi do any of you know what these results mean? I’m very confused by the explanation she provided and I’m it sure if she just wants my money by telling me I need hearing aids. Pls help 🙏