Adjustment to late onset deafness

Daminx

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I am too adjusting to late deafness, only these Last 2 weeks i have been Having Trouble understanding. I have APD and have proberly have been misdiagnosed because it's getting worse. My dad is certain in his Head, that it is just the APD and accuses me of not Listening properly and i get very annoyed. I tried to tell him, it's more than just that and he Said, "it'll go away in it's own time" i think he thinks i have an obsession with being deaf. Even when i was struggling to hear him at the other end of the dinner table and when my brother turned to my dad and started whispering. I can't tell my dad that i am going deaf because he won't Believe me. It's right there and obvious, why won't he pick up on it, just because i already have a "diagnosis"
 

whatdidyousay!

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I am too adjusting to late deafness, only these Last 2 weeks i have been Having Trouble understanding. I have APD and have proberly have been misdiagnosed because it's getting worse. My dad is certain in his Head, that it is just the APD and accuses me of not Listening properly and i get very annoyed. I tried to tell him, it's more than just that and he Said, "it'll go away in it's own time" i think he thinks i have an obsession with being deaf. Even when i was struggling to hear him at the other end of the dinner table and when my brother turned to my dad and started whispering. I can't tell my dad that i am going deaf because he won't Believe me. It's right there and obvious, why won't he pick up on it, just because i already have a "diagnosis"
The next time you go to have your hearing tested bring your dad along too so he can see it " Not all in your head!" If your dad won't go have your audi write him a letter explaining your hearing lost . I hate it when my family whisper right in front of me !
 

AlleyCat

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Who whispers right in front of you? Your kids? That's pretty disrespectful. I think you said your parents are gone.
 

Daminx

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My dad is Starting to understand that i have actually have a Problem now, i think his Problem is the fact he doesn't want his "Little Girl" to have anything wrong with her. He is already going through a Lot of Stress, i can't add to his Problems, but i can't help it if i am going deaf!
 

whatdidyousay!

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My dad is Starting to understand that i have actually have a Problem now, i think his Problem is the fact he doesn't want his "Little Girl" to have anything wrong with her. He is already going through a Lot of Stress, i can't add to his Problems, but i can't help it if i am going deaf!
No you can't help that you're going deaf , I hope you'll be able to get the help you need if your dad is too stress out. What about your mom ?
 

WrenchWench

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Where do I find the "sticky" for late Deafened individuals?
I grew up hard of hearing and managed to get by. As an adult, I acquired profound hearing loss and am still struggling to find my way.
My interactions with the Deaf community have always left me feeling warm and fuzzy. Never before had I felt so accepted immediately.
My experiences with the hearing community have left me a little soured and I would love to chat with others and see if they have any good coping mechanisms / clever explanations of all the annoying ( but common! ) questions:
"How can you talk if you are deaf?" "Why do you need an interpreter if you can read lips?" "They have implants that can cure that you know.."
 

MM2

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Late deafened (how is that defined ? I went deaf at 12 and virtually overnight.) I understand the annoyance of people who question why can't you sign or, you speak so aren't deaf, as I get it every day. My interaction with the deaf community has a bottom line to it, I don't fully integrate with the deaf cultural side, that would be hypocritical of me because I haven't had the background, or have the same view of culture and language, and born-again 'Deaf' are a damned nuisance to everyone. I have a deafened cum hearing ID, so believe we stand apart from the usually labelling. It's important when you start to lose hearing you don't stand back and then attempt to be something you aren't, deaf isn't Deaf. It's a world of stress to try to be something you aren't, embrace deafened 'hood' I say. I sign, or I chose not to, but speak or lip-read, or write it down, it depends where I'm at. I never consciously decided to integrate with the deaf cultural area, I thought that was a cop out. I want to remain as well as I can mange to be part of the hearing world I was born in to. You can't do that if your only social interaction is with deaf people. I suppose it depends on the individual as what path they choose, but I didn't let deafness define
Where do I find the "sticky" for late Deafened individuals?
I grew up hard of hearing and managed to get by. As an adult, I acquired profound hearing loss and am still struggling to find my way.
My interactions with the Deaf community have always left me feeling warm and fuzzy. Never before had I felt so accepted immediately.
My experiences with the hearing community have left me a little soured and I would love to chat with others and see if they have any good coping mechanisms / clever explanations of all the annoying ( but common! ) questions:
"How can you talk if you are deaf?" "Why do you need an interpreter if you can read lips?" "They have implants that can cure that you know.."
me.
 

MM2

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May I ask a straight question and please take it in context, WHAT prevented you re-entering the hearing world/background you came from (I am assuming you were born hearing like myself). Was it just easier to do that ? Less stressful ? both those things ? or a deliberate choice to separate yourself from what you were ? I understand the difficulties are immense, I still experience them myself, but I didn't back away from my hearing culture just because I went deaf, the desire/need to retain that identity was never in question, despite very real issues of access, and yes, lots of stress.... Even 'half-accepted' as a hearing person is OK, because I just didn't envisage entering a deaf community at all, it never occurred to me. I was up for communication help, but couldn't accept the dependency on sign and what went with it, I felt you have to live it to get the best out of it, and I wanted to live outside it so that would present more problems than I already had. I could do likewise tomorrow, it's no big deal to adopt the deaf way, I'm deaf, I can sign I have a cultural deaf partner. I was never asked to choose.. I have deafened friends who cannot do what you did, or, attempt what I do, they just feel no part of anything. When asked they said "I can't be what I am not... " ? What are they being asked ? total assimilation/immersion ? what ?
 

Jezie

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May I ask a straight question and please take it in context, WHAT prevented you re-entering the hearing world/background you came from (I am assuming you were born hearing like myself). Was it just easier to do that ? Less stressful ? both those things ? or a deliberate choice to separate yourself from what you were ? I understand the difficulties are immense, I still experience them myself, but I didn't back away from my hearing culture just because I went deaf, the desire/need to retain that identity was never in question, despite very real issues of access, and yes, lots of stress.... Even 'half-accepted' as a hearing person is OK, because I just didn't envisage entering a deaf community at all, it never occurred to me. I was up for communication help, but couldn't accept the dependency on sign and what went with it, I felt you have to live it to get the best out of it, and I wanted to live outside it so that would present more problems than I already had. I could do likewise tomorrow, it's no big deal to adopt the deaf way, I'm deaf, I can sign I have a cultural deaf partner. I was never asked to choose.. I have deafened friends who cannot do what you did, or, attempt what I do, they just feel no part of anything. When asked they said "I can't be what I am not... " ? What are they being asked ? total assimilation/immersion ? what ?
Curious... who are you asking this of?
 

TF1

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I'm a little late to the thread, but here goes. I was a professional musician for over 46 years and a public school band director for 39 years. I was rear-ended while waiting for a car in front to turn by a lady going in excess of 50 mph in 2000. I received a severe concussion and was unconscious for over an hour. Had serious vertigo for several weeks, but doctors thought I would return to normal after a while. Never happened. I experienced hearing loss in my left ear shortly thereafter but a visit to an ENT showed no problems. About six weeks later I started suffering bouts of vertigo that were dibilitating and would usually last for 12-18 hours. Again the doctor said he could find no cause and hopefully it would clear with time. Again, never happened. I was suffering once or twice a week from vertigo episodes and was missing lots of work. Went to a different ENT and by coincidence was having a vertigo attack during the appointment. The new doc looked at me for about 30 seconds and said that I was having a Meneire's attack. Gave me a Valium pill which lessened the vertigo and put me on glocoma meds which stopped the vertigo temporarily. After a few months the attacks returned and the new ENT told me that I needed a specialist in Meneire's and a was referred to the Tampa Bay Hearing and Balance Center and was aggressively treated for Menieres for 11 years. During that time I had ups and downs, medication changes, a gentamicin injection, and finally lost hearing in both ears by the summer of 2015. I had a cochlear in my left ear in December of 2015 and had my right implanted this past July. With my limited recovery to date, I realize I will not regain my ability to perform or conduct music, but I had lost all that prior to surgery anyway. I have recovered the ability to converse and understand language to a good degree and have been Meneire's symptom free since the first surgery. I have had a few instances of dizziness, but they have only lasted momentarily, not hours and hours as experienced before. I have had to retire, but Social Security and teacher's retirement allow me to get by comfortably. I also have gotten called to help other band directors with classroom management and program development which although only amounts to a day or two for each one, keeps me from being bored and still allows me to use my training and experience from time to time. I know there are those who are against cochlear implants on this site, I would state that in my case after hearing for 60+ years of my life before going deaf, the surgery seems to have given me back at least a partial sense of normalcy to my life. When asked by fellow patients whether I recommend the procedure, I make a point of telling them what it has done for me, but also stress the process is not without pain and frustration and that expectations should be tempered with that in mind.
 
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whatdidyousay!

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I'm a little late to the thread, but here goes. I was a professional musician for over 46 years and a public school band director for 39 years. I was rear-ended while waiting for a car in front to turn by a lady going in excess of 50 mph in 2000. I received a severe concussion and was unconscious for over an hour. Had serious vertigo for several weeks, but doctors thought I would return to normal after a while. Never happened. I experienced hearing loss in my left ear shortly thereafter but a visit to an ENT showed no problems. About six weeks later I started suffering bouts of vertigo that were dibilitating and would usually last for 12-18 hours. Again the doctor said he could find no cause and hopefully it would clear with time. Again, never happened. I was suffering once or twice a week from vertigo episodes and was missing lots of work. Went to a different ENT and by coincidence was having a vertigo attack during the appointment. The new doc looked at me for about 30 seconds and said that I was having a Meneire's attack. Gave me a Valium pill which lessened the vertigo and put me on glocoma meds which stopped the vertigo temporarily. After a few months the attacks returned and the new ENT told me that I needed a specialist in Meneire's and a was referred to the Tampa Bay Hearing and Balance Center and was aggressively treated for Menieres for 11 years. During that time I had ups and downs, medication changes, a gentamicin injection, and finally lost hearing in both ears by the summer of 2015. I had a cochlear in my left ear in December of 2015 and had my right implanted this past July. With my limited recovery to date, I realize I will not regain my ability to perform or conduct music, but I had lost all that prior to surgery anyway. I have recovered the ability to converse and understand language to a good degree and have been Meneire's symptom free since the first surgery. I have had a few instances of dizziness, but they have only lasted momentarily, not hours and hours as experienced before. I have had to retire, but Social Security and teacher's retirement allow me to get by comfortably. I also have gotten called to help other band directors with classroom management and program development which although only amounts to a day or two for each one, keeps me from being bored and still allows me to use my training and experience from time to time. I know there are those who are against cochlear implants on this site, I would state that in my case after hearing for 60+ years of my life before going deaf, the surgery seems to have given me back at least a partial sense of normalcy to my life. When asked by fellow patients whether I recommend the procedure, I make a point of telling them what it has done for me, but also stress the process is not without pain and frustration and that expectations should be tempered with that in mind.
I am sorry to hear of that horrible accident you were in . I was in horrible and had the same things happen to , how are you doing today ? Do still have pains in your head?
 

TF1

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Both surgeries were pretty much the same painwise. I had constant pain for about four days, then intermittent pain for about two weeks. Pain subsided a lot when the implants were activated, but I don't really know why, just what happened. At this point, almost two months out on my last implant, I am pain free.
 

Double-U

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I still have normal hearing in my left ear. The hearing in my right ear is normal up to a little past 3k hertz. Somewhere between 3k and 4k, my thresholds dip down (or is it up?) into the fifties. I suffer from hearing loss "attacks" that can last anywhere from twenty minutes to well over ten hours.

It all started in April of last year. Well, check that: it all started about ten years ago, when I woke up in the middle of the night deaf in one ear. I paced the floor for about an hour and a half before deciding to get dressed and go to the emergency room. Before I could grab my clothes, my ear returned to normal; I could hear again. No harm was done, so I rarely thought of that night again... until April of 2015. I was driving my car when my ear began to ring. My ears just do that from time to time - ring for a few seconds. This time, though, it didn't go away. It just got louder as my ear started to feel full and blocked. I finally got to see an ENT about five days later. An audiologist checked my hearing and confirmed the high frequency loss.

I adjusted as best I could, but I was nervous because I knew this had happened before. Then, in August, it happened again, this time in my left ear, and my life took a definite turn for the worse. The diagnosis was autoimmune inner ear disease. I'll spare you the details, but suffice it to say that I've had about six more attacks since then, only one of which was bad enough to damage my hearing. Thank God I got almost all of it back since that one hit me back in March.

It's really unpredictable, and that's the hardest part, because I have an unusually low tolerance for uncertainty. The emotional strain is almost too much to bear, as I have no idea what will happen from one day to the next. Also, the steroids I foolishly (against the advice of multiple docs) kept taking for four months had some mild ocular side effects that still haven't completely subsided, making me many times more anxious than I otherwise would have been. I lost about 25 pounds thinking that the problem might be something I'm eating.

I have begun to learn sign language by watching Lifeprint videos on Youtube, but if I go deaf, I don't know who I would communicate with using ASL.
 
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Double-U

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Late deafened (how is that defined ? I went deaf at 12 and virtually overnight.) I understand the annoyance of people who question why can't you sign or, you speak so aren't deaf, as I get it every day. My interaction with the deaf community has a bottom line to it, I don't fully integrate with the deaf cultural side, that would be hypocritical of me because I haven't had the background, or have the same view of culture and language, and born-again 'Deaf' are a damned nuisance to everyone. I have a deafened cum hearing ID, so believe we stand apart from the usually labelling. It's important when you start to lose hearing you don't stand back and then attempt to be something you aren't, deaf isn't Deaf. It's a world of stress to try to be something you aren't, embrace deafened 'hood' I say. I sign, or I chose not to, but speak or lip-read, or write it down, it depends where I'm at. I never consciously decided to integrate with the deaf cultural area, I thought that was a cop out. I want to remain as well as I can mange to be part of the hearing world I was born in to. You can't do that if your only social interaction is with deaf people. I suppose it depends on the individual as what path they choose, but I didn't let deafness define

me.

Perhaps we should all just learn to sign and create the world of the "little d" deaf.
 

MacNewton

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I am all hard of hearing senior now in my mid 60s and have been hard of hearing since I was first tested for hearing loss when I was in my late teens. I have no hearing on my right here even after 2 surgeries they were not able to fix the problem. I have Otosclerosis in both ears. I have a partial hearing in my left ear and through the use of high power hearing aid I was able to function enough to handle a management position and a large corporation. Unfortunately over the years my hearing has reached a where my HA does not provide enough clarity to be able to understand a conversation.

I have a loving and compassionate family that understand the situation and except the fact but I have to how things repeated or explain to the point where I can understand what they're saying.

With over 40 years working with technology I have seen lots of advancements in hearing Technology. That said but Workforce has not kept up with technology when it comes to communicating was a hard of hearing person over a telephone line.

Things have changed drastically after Apple released its first iPhone in 2007, along with the android phones the ability to text has made it easier for a hearted hearing person to communicate what's others in the hearing world.

Companies large or small, Government agencies another support staff in hospitals in other areas where you need to how I know I'm going Conversation have not kept up what's the latest technology. I live in Canada Vancouver British Columbia. They still try to have you off to bus service call TTY or Internet relay. Please services may be good for some but they're very outdated considering what we have available for us today.

I make it my business to attempt to educate anyone and everyone that runs a service. My suggestion to them it Is to buy tablet whatever make it doesn't matter as long as you can do some messaging on it.

I prefer the iPad or an iPhone to help me communicate with my extended family. Most companies have not set up accessibility department that cater to people with handicaps like hard of hearing or people with visual problems. It's nice to see that with most messaging programs everyone you can talk to everyone else. Apple to Android is no longer a problem.

In some cases I have got an around this situation by checking out the companies Facebook page. I'm using the message System that Facebook now incorporate. It's surprising that most companies do not realize that they have this facility. Whenever I can I let them know but I will be communicating to them by messenger through Facebook to review any problems I have. I'm can now talk to some hospitals and government agency and few retail stores.

What I would like to see everyone promote Facebook messages whenever can, I sure people are already doing this, but if more people were able to educate companies to incorporate messaging in their business the better our lives will be.

Thank you for your time.
 

Audiofuzzy

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That's great what are you doing. I wish you good luck and success with promoting higher awareness that there is way more HoH that are still in the workforce who need help, and help is available. And how.

Fuzzy
 

Tony_Bars

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Looks like this thread keeps on going. Here's my story. Randomly came down with viral encephalitis last January. 2 lumbar punctures and a brain biopsy later, I could hardly walk or think. I regained my balance and my cognitive abilities, however, I wasn't hearing too well. After I was released from the hospital, I figured I had some earwax or whatnot so I made an appt at the ENT. He checked my ears, clean as can be. He did a tuning fork test and I didn't hear anything. Later scheduled a hearing test and found out I have a reverse slope (low frequency) hearing loss. I have 60% speech discrimination in my left ear and 96% in my right ear. My neurologist confirmed this is from damage in my brain stem caused from the encephalitis.

I went back to work after 3 months and have been up and down with depression due to my inability to hear well which happened so suddenly. I am using hearing aids, but do not get tremendous benefit due to the fact that my hearing loss is atypical. The phone and noisy places are my biggest struggles. I use InnoCaption and Bluetooth streaming to my hearing aids to get by on the phone at work. It certainly helps, but nothing is like having normal hearing again.

I have researched hearing loss caused by encephalitis almost obsessively and my hope is that brain plasticity will help my speech discrimination improve over time as has been documented in some of the studies I've read. Until then, I'll continue saying "huh?" like it's going out of style.
 

LoveBlue

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Looks like this thread keeps on going. Here's my story. Randomly came down with viral encephalitis last January. 2 lumbar punctures and a brain biopsy later, I could hardly walk or think. I regained my balance and my cognitive abilities, however, I wasn't hearing too well. After I was released from the hospital, I figured I had some earwax or whatnot so I made an appt at the ENT. He checked my ears, clean as can be. He did a tuning fork test and I didn't hear anything. Later scheduled a hearing test and found out I have a reverse slope (low frequency) hearing loss. I have 60% speech discrimination in my left ear and 96% in my right ear. My neurologist confirmed this is from damage in my brain stem caused from the encephalitis.

I went back to work after 3 months and have been up and down with depression due to my inability to hear well which happened so suddenly. I am using hearing aids, but do not get tremendous benefit due to the fact that my hearing loss is atypical. The phone and noisy places are my biggest struggles. I use InnoCaption and Bluetooth streaming to my hearing aids to get by on the phone at work. It certainly helps, but nothing is like having normal hearing again.

I have researched hearing loss caused by encephalitis almost obsessively and my hope is that brain plasticity will help my speech discrimination improve over time as has been documented in some of the studies I've read. Until then, I'll continue saying "huh?" like it's going out of style.
I have a reverse cookie-bite - low and high freq loss. If your hearing aids are not helping, you should try to find an audiologist who knows how to program them for reverse slope hearing loss.
Also, if you have not already found this website, it had good info regarding reverse slope and reverse cookie-bite hearing loss
http://hearinglosshelp.com/blog/the-bizarre-world-of-extreme-reverse-slope-hearing-loss/
 

omgitsrichie

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Probably a tl;dr but here goes

When I was 16, I awoke with a feeling of stuffiness in my left ear. The world sounded more muffled than it used to. The ENT specialist took an audiogram and apparently I was suffering from a precipitously sloping high frequency sensorineural hearing loss. We could not determine a cause; I hadn't had exposure to much excessive loud noise save for my share of a few pop-punk concerts (pop-punk, not hard rock or heavy metal, mind you...and my audiogram pattern did not reflect the characteristic "notches" typically present in noise-induced loss), I had not taken any ototoxic drugs, and nobody in my family had experienced hearing loss at such a young age. I even later had an MRI done to rule out the possibility type 2 neurofibromatosis (tumors along the auditory nerve).

My left ear was severely affected--I was only able to detect up to about 2 kHz in that ear. My right ear was also apparently bad, only able to hear up to about 8 kHz. I was still able to understand conversations fine for the most part, so I didn't see much need for hearing aids. Not then, at least. I also began suffering from tinnitus, though I had largely learned to ignore it. We decided to just continue monitoring my hearing for changes.

Fast forward five years later, I felt my hearing loss had inexplicably exacerbated even further. A visit to the ENT told me my right ear, which I had been reliant on up to that point, was now only able to hear up to 2 kHz. My left ear had declined too, now down to 1.5ish kHz. I had pretty much lost 90% of my hearing, and now it is beginning to affect my quality of living. I am constantly struggling to understand people in noisy environments, whether it be at parties, bars, or even over the hum of a car engine. I can't understand whispers or the voices of children or occasionally, females. I need subtitles for TV shows, movies, and video games. Given the precipitously sloping nature of my hearing loss--normal (above average, actually) hearing at low to mid frequencies, but sharply dropping off at high frequencies-- everything seems to be the appropriate volume, but it all lacks clarity. Context and lip-reading help, but it only gets me so far. Even music has lost its appeal to me; it lacks the rich timbre it once had and even worsens the ringing in my ears. Not being able to enjoy music is an especially hard blow, as an audiophile who insists on listening to quality sources through quality headphones and as a musician who pays more attention to instrumentation than the casual listener.

To make matters worse, my once-bearable tinnitus is now affecting my quality of life as well. Whenever I'm stressed out, it grows louder and more unbearable. It's distracting me from my studies. Reading that tinnitus can drive people to the brink of suicide isn't offering me any solace.

My ENT still hasn't been able to pinpoint a cause, nor does he seem very interested in finding one. It wasn't until I had inquired about the possibility of NF2 that he had an MRI ordered, and when the scans came back normal, he simply whisked me away and told me to come back to have my hearing checked in a year. I know finding the cause isn't really their specialty, but this is very frustrating to say the least. Browsing various forums, I can't seem to find anyone with a similar story--everyone else seems to be either completely deaf from birth or has a "loss" at like 15 kHz (I'd kill to be able to hear those sounds again!)

I've been visiting an audiologist and am currently trying to get some hearing aids fine-tuned. It's been rather challenging due to the nature of my hearing loss; the benefits have been marginal at best. How much can they possibly help if all they do is amplify frequencies I'm incapable of detecting to begin with? And I don't want cochlear implants due to the invasive nature of the procedure, their many limitations, the long adjustment period, and the fact that they would destroy whatever was left of my natural hearing.

I suppose I'm holding out hope for some novel therapy to arrive--some way to regenerate my damaged cochlear cells. But I've been doing my reading and it seems that there are still many hurdles and that clinical trials aren't expected to start for another decade or so...I'll be beyond my youth by the time a therapy hits the market. Unless an optimistic soul can tell me otherwise?

I am socially isolated and devastated. "What have I done to deserve this? There are people who perform at 100-decibel concerts every night for a living, people who attend raves and night clubs without hearing protection several nights out of the week, people who crank their music full blast, people who fire guns recreationally...and their hearing is still better than mine. I am way too young for this to happen," I keep telling myself. I had a whole social life and career ahead of me. But now, keeping up with conversations in a social setting is a challenge, and I'd rather smile and nod when I do not understand something (which was often the inappropriate response) rather than ask someone to repeat themselves for the fifth time (after which they give up and moved on). It makes me come across as cold and insincere. And I avoid telling people about my disability out of fear of the stigma attached to it, especially for someone at such a young age. I now prefer to just keep to myself in these environments or avoid them altogether. As someone who is deaf-but-not-quite, I didn't feel I belong in either the world of the hearing nor the deaf community. I am also anxious about my career as a future pharmacist, where I may have to work in a noisy setting with the constant ringing of telephones, drive-thru bells, and pills shaking in bottles, where incorrectly transcribing a verbal order over the phone could lead to workflow inefficiencies or worse--the death of a patient. I am fortunate enough to have my mother, a loving girlfriend, and a few close friends to support me, but even then I can't help but feel disconnected. And to think my hearing can only get worse...I don't think I'm depressed yet, but constantly agonizing about this and spending hours upon hours futilely searching for a cause or cure is likely not good for my health or productivity.

I know it's a long shot, but does anyone have any idea what could be causing my hearing loss? Know something that my ENT doesn't? Know about advances in novel cochlear regeneration therapies? Dealing with tinnitus? Advice or coping strategies for a young millennial whose life is getting turned upside-down thanks to this debilitating condition? Anything...?

I'm sorry if I offended anyone by this post btw. I haven't quite come to terms with my condition yet and I don't know if I am willing to put forth the effort to become one with the Deaf community. I still very much want to be part of the world of hearing.
 
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