Im 23 with a new profound hearing impairment struggling to cope...help please?

Jenifer35

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First of all good afternoon to you all! :wave:

I'm a Newbie, & I'd greatly appreicate your advice or guidence regarding my hearing loss if you feel you can help...


My names Jen, I was diagnosed with profound deafness at 19 years old (Im now 23) - the cause of which has never been determined or fully investigated. I was told by an ENT doctor it was generic (no one in my family suffers with hearing loss) and that it will degenerate over time...I can expect to be fully deaf by 60.

Recently, as my hearing is getting steadily worse I am finding it increasingly difficult to go about my normal daily routine. I wear two hearing aids which are of some assistance, but I am starting to struggle to cope as my hearing loss is getting progressively worse.

I work full time for the NHS & am increasingly finding it hard to communicate affectively. I am consistently on edge when talking to people (Infact, ive given up on the phone completely despite having a specialist RNID handset) and dread when anyone talks to me. I concentrate so hard on understanding what people are saying, that I regularly don't take in what they have actually said.

If I mishear which results in error, or if I consistently have to ask people to repeat themselves, it upsets me to think that I am easily conceived as being unintelligent & incapable of performing tasks because of my hearing.

I am so depressed over this, and on plucking up the courage to speak to my GP I felt I was dumbed down, because he stated that I seemed to be having a conversation with him fine whilst I was telling him about my anxiety (in a small confined space on a 1-2-1 basis I usually am able to converse, its when there is background noise or I am unaware of a conversation is going to be made with me that I struggle)

I am so depressed, I cry consistently about this as I have been told nothing can be done. I do not want to not be in work, but I find myself dreading going in. People make unintentional hurtful comments (more due to the lack of disability awareness training amongst staff I employed with...and I work for the NHS!...ironic isn't it?!)

I am really unhappy. I do know I am not the worst off person in the world, and having people telling me this does not seem to help my situation...it is all relative to what i know isn't it? I wondered if anyone could kindly offer me confidence boosting tips or advice on how to be proud of the person I've become, and assistance in dealing with these horrid social situations - instead of crying myself to sleep every night, and becoming depressed because of my disability.
 
Wow. Do you realize how similar our situations are? I also started going deaf at 19 and am currently severely hard of hearing at 23. I also don't really know why this is happening. It's really hard to cope, I know...I wish I had more advice for you. I will say this...you will find a way. I have good days now where I feel better because I know that I am still a person, still lovable, and still valuable even though I am going deaf. There are the bad days too, where I cry because I can't hear my baby and I feel bad because I know it's hard for my husband to repeat himself all the time. I know we will survive this and grow to be strong. Deafness is not the end of life, but the beginning of a new one that will be different, yes, but can be just as wonderful as the old. I get really moody about this. Like I said, I still have very bad days when I feel utterly worthless...but then, there are so many technologies to help communicate...and I'm learning ASL and teaching it to my baby.

As for the people making comments. They must really, really unhappy with themselves to be so mean. They have no idea what you are going through, and they aren't worth your tears. I know it won't make the pain less to know that now, but maybe someday you will realize it's true. I wish I could stop how much this is hurting you. I wish I could tell you that I never feel sad for my life the way it was, but I can't do that. I can tell you that life is a changing force and that this change is difficult, but it doesn't have to be bad. Find some friends, if you can, that will accept who you are. I will say that I hope this doesn't stop you from enjoying people because I have let it affect my social life, and I wish I hadn't. I really have trouble going out...but it doesn't have to be that way. I really hope I helped a little in some way or other. Please, please email me if you want to talk more.
 
Hi jenifer, I am from UK, I can be little of assitance have you tried LINK? I had few people (mostly late deafen people) saying they are great. They'll give you advice/help.

LINK The British Centre for Deafened People
19 Hartfield Road
Eastbourne
East Sussex
BN21 2AR

Textphone: 01323 638230
Telephone: 01323 638230
E-Mail: linkcntr@dircon.co.uk
 
A sudden onset of hearing loss can be quite scary. There are many support services across the country you can try. Do let us know where you live if you will or send me an email.

I was/am an advocate for people with a hearing loss and will be happy to help you.

Hang in there !!!
 
I'm from the UK too. Have you tried applying for Access to Work, I believe they can provide fm systems and amplified phones etc. I have a Smartlink fm system provided by Disabled Students Allowance, it works well as an fm system, i.e. a lecturer speaking from a distance, but you can also use it to hear people much nearer in normal conversations, with the zoom microphone, which does help in background noise. You can also get an adaptor to use your Smartlink with a phone, you can then hear the callers voice in both HAs with no background noise. Also can you lipread, if not maybe you could enrol for classes, it will help.
 
Another new poster that could benefit from an adujustment to disability support group, don't you guys think?
 
Another new poster that could benefit from an adujustment to disability support group, don't you guys think?

Yes, there seems to have been a big influx of them recently.
 
I hope it happens! It's such a brilliant idea. How does it get started?

I suppose we need to ask the mods for approval. I was hoping that Candy Brown Eyes would undertake to do that, since she posted approval in the other thread that you started.

If we were going to coduct the thread as a support group type forum, we would need to have some rules and guidelines in place so that the forum doesn't go off course like one of the chat threads.
 
yes agreed the smartlink can be a lot of help especially in the background noisy situations u can get the receivers for ur ha's and be good to go and not have to worry so much with the noise around you!
 
Have you considered a cochlear implant? Because you are late-deafened and you are profoundly deaf, you might be a good candidate for one. There is a lot of controversy in the deaf community about them, but the important thing is that they CAN be very successful for people who are late-deafened.

loml, why do you suggest Cued Speech? The OP isn't really the target "market" for cueing, and it's not likely all of her co-workers would learn to cue...seems like a suggestion out of left field to me.
 
Starting at home......

Etoile - Great question! Let me explain my suggestion.

loml, why do you suggest Cued Speech?

Within the intimacy of the home, the language that is familiar and used is English, for everyone. One of the greatest challenges is communication now within the family itself. Learning the entire system of Cued Speech, takes approximately 16 - 20 hours, after that it is simply practice.


The OP isn't really the target "market" for cueing, and it's not likely all of her co-workers would learn to cue.
This is huge misconception by people, that cuers can only communicate with other people who cue. This couldn't be further from the truth. :) They communicate with people who understand/use English, they may choose to use voice or printed message. Also, a deaf/hoh person who cues has experience with a system that has "honed" their speech reading skills.


Yeah??
 
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