I’m late deafened and find myself not being able to identify with either hearing or deaf world. Anyone else feel the same? Trying to find my place.

vegandreamer

Active Member
Here in Canada they are $25,000 and up. They pay for kids but not adults

That's a shame because deafened adults seem to benefit more from CI then kids who can't always say when the machine goes faulty and didn't decide to have a CI in the first place.

I know how tiring it was when I used to read lips and listen with powerful hearing aids. I was glad to lose what little hearing I had eventually.
I can also sympathise with you about not belonging as I'm profoundly deaf and partially sighted. To communicate now people have to finger spell on my hand.
 

SpaceGlitter

New Member
Hi!

I'm in a similar situation, but my hearing loss isn't profoud. I'm in the moderate/severe range and I identity as HoH. I began losing hearing in middle school and it never felt relevant until adulthood and I started working, by then it was bad enough that I couldn't use the phone or work customer service jobs. It's isolating and frustrating, especially if you don't have people who use sign around you. I've taken to signing while I speak regardless of where I am. Even though I live in a rural area, I've actually ran into a few people who understand ASL. Just *being* both at that same time, speaking two languages is helpful to me. Even if people don't sign, they usually get the message that I can't hear them well based off my hearing aid and signing. It helps a little, sometimes, bit most of the time being in between hearing and Deaf is just... difficult.

there are a lot of late deafened/hoh people on here and I've found them to be a pretty supportive group. welcome!
 

stephaniep

Active Member
Vegandreamer, that must be awful to have profound hearing loss and be blind as well.
I have profound hearing loss and on someday's my eyes are blurry, drives me bonkers, so can only imagine not being able to see as well as not hear?
 

stephaniep

Active Member
JanieN, when I read your post, I felt like crying because I feel so much like you. In a way we are sitting on a fence half in between the hearing world and the deaf world. I always took my hearing for granted till I lost most of it. Do we ever get use to it? Just when we pass one hurdle it seems there are more hills to climb when hearing loss is progressive and gets worse?
All the best with your CI when you get it. Keep us posted.
 

Bear

Well-Known Member
I too was like you. I was hearing until the age of 14. I then became hard of hearing and stayed that way well into my 30's. Before my mom discovered hearing aids and etc....I did nothing but lay on the couch for the first year. I wouldn't talk to anyone including her. I ignored my friends. I was in a deep state of depression. I withdrew into my own world. Then, I went to a deaf school at the age of 15 almost 16. At first the school didn't wanna let me in. They said I wasn't deaf enough. I had skipped school due to my hearing issues and got into trouble with the courts for skipping school. My probation officer then applied for SSI for me and with that determination the school had no choice but to let me in. I knew very little signs before entering. I truly acted more hearing than deaf at first. I found it very hard to fit in at the school my first year. I was extremely isolated my first year or at least that's what I felt like. During the summer I practiced hard to pick up ASL, I went back and things got smoother. I won't lie though, there are still those with the *not deaf enough* attitudes.

I think you will belong when you decide who you want to belong with. I have a mixture of both hearing and deaf friends now. Besides my mother in law and husband no one else in my family is deaf. It is a struggle as most of them do not sign. It will never be easy for us but we do what we can. The rest is up to those around us.

Good luck.
 

PinballWiz

Member
JanieN, I'm new here and this post jumped up to the top. Just want to say I understand completely. My loss is about the same as yours, and occurred over a number of years. I'm quite a bit older than you, I suspect (50's). For you a transition to the Deaf world could be possible, though I sense that it can be challenging for the late deafened. Me, I'm too old and entrenched so I'll just navigate what I know as best I can.

Bottom line is that there are a lot of us out there stuck somewhere in between. We understand what you're going through. Good luck.
 

ap1287

Member
I’m new to the forum and reaching out. I would love to hear your stories on how you deal with being caught between the hearing and deaf worlds. I’m late deafened. I’ve been hard of hearing for 15 years but the last 6 years I have Proufound hearing loss (110dB). I no longer fit in with the hearing community and struggle with communication. I read lips but it’s very difficult. Even when I explain that I can’t hear and they have to face me when they talk they still move around too much, put their hands near their lips or turn away mid sentence. It becomes quite frustrating and to be honest very very exhausting. It always surprises me how many people will just carry on a conversation with someone else not considering the fact that I can’t hear and can’t follow what is being said. I know people don’t do this on purpose or to be mean but I really feel excluded and alone when this happens. I have been signing for 3 years now but don’t have anyone to sign with so I find that frustrating as well. My husband is learning so that is wonderful. But outside of that my world has become so much smaller. I feel like I’m stuck between hearing and deaf worlds. Not really belonging to either. It’s quite a horrible feeling. I would love to hear if anyone has had the same circumstances and how you dealt with being caught in the middle. Thanks in advance!

I don’t use the phone at all, I can’t hear even with my aids and using a streamer. I have to use CC when watching TV or movies. When going out in public like restaurants and church I usually turn off my aids because it’s just loud kaotic noise that I can’t make sense out of. I have to focus quite intently at what people say to me. It’s quite exhausting.

I feel this same way. I can't use a phone anymore because my hearing has gotten progressively worse. I have just applied for ZVRS so I can be more independent. I have been compensating with lip reading my whole life so that gotten easy but as I've gotten older I tend to get frustrated with people more, especially ones that should know better (closer friends and family). I have been struggling personally with the more profound loss lately and not being deaf enough for the deaf community or hearing enough for the hearing. Hope it gets easier for both of us! Good luck.
 

Danders

New Member
Hi Janie,
I lost my hearing from meningitis when I was 18. I'm now 20. I don't sign or read lips. I've never worn a hearing aid. The audiologist said that they are not strong enough and my word recognition scores were super low. I tried for CI and didn't qualify. The meningitis did a real number on my ears and it's just not a viable option for me. I do feel your frustration. I didn't know until recently there is two worlds. Or even two different kinds of deaf (deaf and Deaf). Everything is new to me. It is so overwhelming. Do you experience anger and depression? I am trying to find out who I am now with this hearing loss. I am starting to learning some sign language now.

That can be really rough. I'm severely-profoundly hard of hearing since I was born so I don't know what it's like to be hearing (I have a very good idea of what I'm missing though). Have hearing aids that get my hearing to a level where I can communicate but I still need to lipread to communicate and I hate the telephone. If I am with someone I know in a dead quiet room I can understand them without looking at them but my wife STILL doesn't understand that little fact.

Lipreading would probably help you to some degree but it'd take some practice... find someone who would be willing to talk to you, maybe use text to figure out what they are saying. Find someone that is easy to lipread in the first place. I can lipread without hearing aids on but the hearing aids really take a lot of frustration out of it, and I don't have to concentrate so much w/ lipreading. I wouldn't do any more than 15-30 minute sessions.... lipreading is VERY tiring as you have to focus so much.
 

Nita Thomas

Active Member
I’m new to the forum and reaching out. I would love to hear your stories on how you deal with being caught between the hearing and deaf worlds. I’m late deafened. I’ve been hard of hearing for 15 years but the last 6 years I have Proufound hearing loss (110dB). I no longer fit in with the hearing community and struggle with communication. I read lips but it’s very difficult. Even when I explain that I can’t hear and they have to face me when they talk they still move around too much, put their hands near their lips or turn away mid sentence. It becomes quite frustrating and to be honest very very exhausting. It always surprises me how many people will just carry on a conversation with someone else not considering the fact that I can’t hear and can’t follow what is being said. I know people don’t do this on purpose or to be mean but I really feel excluded and alone when this happens. I have been signing for 3 years now but don’t have anyone to sign with so I find that frustrating as well. My husband is learning so that is wonderful. But outside of that my world has become so much smaller. I feel like I’m stuck between hearing and deaf worlds. Not really belonging to either. It’s quite a horrible feeling. I would love to hear if anyone has had the same circumstances and how you dealt with being caught in the middle. Thanks in advance!
It is kind of like being in limbo... eventually, though, you will get comfortable with your own limitations. It is, however, an ongoing struggle with both good and not so good times. Hugs. As a HOH I know what you mean about not fitting into the hearing world or the deaf world. But there are so many like us, as you get older, you will meet more people like yourself, too.
 

Nita Thomas

Active Member
That can be really rough. I'm severely-profoundly hard of hearing since I was born so I don't know what it's like to be hearing (I have a very good idea of what I'm missing though). Have hearing aids that get my hearing to a level where I can communicate but I still need to lipread to communicate and I hate the telephone. If I am with someone I know in a dead quiet room I can understand them without looking at them but my wife STILL doesn't understand that little fact.

Lipreading would probably help you to some degree but it'd take some practice... find someone who would be willing to talk to you, maybe use text to figure out what they are saying. Find someone that is easy to lipread in the first place. I can lipread without hearing aids on but the hearing aids really take a lot of frustration out of it, and I don't have to concentrate so much w/ lipreading. I wouldn't do any more than 15-30 minute sessions.... lipreading is VERY tiring as you have to focus so much.
You could benefit by joining a local group of HOH in your area... having others that have similar problems is really helpful. Yes, deafness can be depressing, but at the same time, it can be peaceful because you don't need to hear all the bunk that is around sound wise. As for your wife, she really needs to be involved somehow -- perhaps take her with your to your audiologist for your own hearing tests. My daughter was shocked at how little I hear without hearing aids.
 

Danders

New Member
You could benefit by joining a local group of HOH in your area... having others that have similar problems is really helpful. Yes, deafness can be depressing, but at the same time, it can be peaceful because you don't need to hear all the bunk that is around sound wise. As for your wife, she really needs to be involved somehow -- perhaps take her with your to your audiologist for your own hearing tests. My daughter was shocked at how little I hear without hearing aids.

Not depressed at all.... there is much going on in the world that I am very glad that I totally miss out on.

Haven't had hearing tests for somewhere around 20 years. Don't care to bother with them. I get along alright just as it is.
 

Valorrian

Active Member
That can be really rough. I'm severely-profoundly hard of hearing since I was born so I don't know what it's like to be hearing (I have a very good idea of what I'm missing though). Have hearing aids that get my hearing to a level where I can communicate but I still need to lipread to communicate and I hate the telephone. If I am with someone I know in a dead quiet room I can understand them without looking at them but my wife STILL doesn't understand that little fact.

Lipreading would probably help you to some degree but it'd take some practice... find someone who would be willing to talk to you, maybe use text to figure out what they are saying. Find someone that is easy to lipread in the first place. I can lipread without hearing aids on.but the hearing aids really take a lot of frustration out of it, and I don't have to concentrate so much w/ lipreading. I wouldn't do any more than 15-30 minute sessions.... lipreading is VERY tiring as you have to focus so much.

Yeah, lip reading is very challenging and tiring. Since I posted that, I've been learning to sign. My whole family signs already. I was late to the game. I was too angry to even learn. Finally, I am accepting it's something I need in my life to reconnect. I usually practice with my brother lipreading. At first he was all for it but now that I know enough sign language to communicate he doesn't want me to lipread. He just wants to sign to me. He said I suck at lipreading and I don't need it now that I have asl. Do you sign at all?
 
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