Is this normal for people with hearing loss?

[Renachelw]

Hi,

I'm 22 and have been losing my hearing over a span of 7+ years, and the last 3 years was so bad that I need a CI to hear, but have not gone for the surgery. I'm currently surviving on lipreading. 

I feel like i'm becoming increasingly socially retarded, and being described often by people to be 'inept', 'lost', 'in a daze' etc. 

I am always awkwardly turning around in jerks etc. because i dont realise someone is behind me, and my face expressions becomes funny/weird. 

I really do not know if its because of my hearing or something else. Am I being lazy, or do i really feel tired all the time? How come I cant cope with work even if it's emails and hearing not needed etc.. i'm fine with writing articles and website stuff, but always nervous/make mistakes when emailing people. 

I do feel rather lost most of the time because I cannot hear, but sometimes even when it's not needed, like emails etc, I seem to be lacking/unable to do well?

My grandma has hearing loss but idk, I think she is less 'inept' compared to me? 

I know that people around me think that 'not all deaf people are like that, its just you', and I keep getting scolded for not being alert/lost/lazy, but idk what else can be done?? i feel so lost?

Like, i'm just sick of having people to understand me, because they dont? 

 

p.s: would just like to add that when I was 15 , I had really horrible bullying experience (not because of my hearing). So now idk if im like this, afraid to speak up, talk to ppl, withdrawn etc, because of my hearing or my confidence. 

I feel so lost and idk if this can be solved by CI or will i still be the same :/ 

 

[Mary Beth]

Hi @Renachelw

I am sorry to read about your bullying experience.

 

I had progressive hearing loss too.  Mine started at age 13.  It definitely impacted how I interacted or didn’t interact with people.  Losing my hearing was very difficult for me.

 

Are you going to get a CI?  Getting my CIs has changed my life.  It is amazing.

 

Is there someone you can talk with about your feelings?  Progressive hearing loss is a difficult experience.

 

Wishing you the best.

[Kara of Canada]

Hi @Renachelw  I understand your pain. I too have had many bullying issues in life. Mostly as a kid. I have progressive loss as well. I got very isolated because people didn’t understand me and I was frustrated to keep asking for people to repeat themselves. You are not stupid or retarded in any way. But you may want to consider looking into the benefits of a CI because it has also changed my life. A life saver actually. You have to choose what works for you. No one can decide for you. I won’t lie it does take hard work to hear again but the benefits far out weigh the hard work! I can talk on the phone again and listen to music which is a true blessing. Conversations with people are also good again. So please do get yourself someone to talk to and see what your next step is. Best if luck, Kara

[Jewel]

Hi @Renachelw. Sorry to hear what you're going through. Hearing loss is definitely very difficult to accept and live with. Like you I haven't gotten my CI yet. People who knew me before my hearing loss have remarked that my personality has changed. I used to be very extroverted and outgoing. Now I'm more withdrawn and introverted. But I'm more likely to be that way around people who I don't feel comfortable around or who I can't understand when they are speaking. I think that lipreading for hours on end is extremely draining.

Do you have regular conversations with good friends? I think that when we don't converse orally with people often we may start to feel a bit awkward when communicating with others via email, etc. It is like the same social anxiety we experience when talking to someone we don't know well or don't understand when they are speaking is the same thing we experience when we have to communicate via email and texts. 

Do you have a good friend you can confide in? Maybe find out from that person whether they have noticed any changes in you. Not because someone remarks that you're inept makes that a fact. It could just be a thoughtless remark of someone who means you no good. 

Pay more attention to what your true friends say. 

I'm curious to see how life changing the CI will be for me. Will I regain my old personality? Maybe you should give serious consideration to getting a CI. 

Don't be afraid to speak up for yourself. No better time to start than now. If we are confident in ourselves, people will see it and back off. 

Anyway these are just my thoughts. I hope things will improve for you. You're not alone. 

[Valentin]

Hi @Renachelw

I’m sorry to read you wrote. I began to lose the hearing around 15 years ago. It was difficult to me to take the decision, but in the end I went ahead.
 
All of us have our “journey”. Some people go faster than others. I’m living it with a slow recovery, but sincerely I don’t want to come back again to silent world. This has been one of the hardest decisions I've taken but I don't regret it.
 
Cochlear implant changed my life. Cochlear implant changes the live of the people.

 

 

 

[Mary Featherston]

I agree with the others - I have been slowly losing my ability to interact normally and have lost a lot of abilities that people take for granted.  I'm sitting here with my brand-new implant in my right ear and can hardly contain my excitement about the future.  Getting back to offhand and easy conversation with my husband, hearing things in meetings at work, knowing when a car is coming up behind me in a parking lot.

It all adds up and as Jewel said, it changes who you are.  I can tell you:  there will be no one who will work harder at the training and rehab than I will because I know what I may be able to get back from my CI.

And I hope you find your path too.

[Mary Beth]

@Mary Featherston, you are in for a world of fun!  It took me quite awhile to not feel like I was eavesdropping since I could hear everything people around me were saying even when they weren’t talking to me at all.  I have been a sound junkie ever since activation.  Over three years and I LOVE it so much.  Aural rehab is work but for me (and I get the sense it will be similar for you too) it was so much fun to teach my brain to hear with a CI.  When is activation?

[Mary Featherston]

@Mary Beth we didn't set the activation date yet.  They're going to call about a follow-up visit and then we'll schedule a bunch of appointments.

Luckily my husband can hear on the phone for me!

[Mary Beth]

@Mary Featherston, terrific.  After a few days of recovery, if you get bored...check out the free InnoCaption app and service.  It uses court reporters and works with cell phones.  I tested it out for a hard of hearing friend and she loves it.  

[Jewel]

@Mary FeatherstonI don't understand your doctor's office. After all they are dealing with deaf people and so I would have thought that they would communicate with you via email. I am glad that's about my doctor's office uses email to communicate with me. If they didn't I would be in trouble. Did you ask your doctor's office whether they use email to communicate with their patients at all? Just curious.

[Mary Featherston]

@Jewel - when I was setting up the surgery, the surgeon's assistant did communicate with me via email.  I think they would have if I'd asked but since Ron was there for the surgery and met the whole team I just told 'em to call him and he can speak for me.  We've been married for 30 years, we're a team.  :-)

[Renachelw]

Thanks everyone

Yes, i think Social Anxiety is the word for it. I feel like my brain is slowing down a lot too lol.

Let's just hope i'll regain my confidence after I can hear again. Right now I just feel so scared of everything, even though I know my fears are irrational. 

Will be doing the surgery soon. I hope all goes well  

[Mary Featherston]

Good luck to you, @Renachelw!

[Kara of Canada]

Glad to hear @Renachelw we will be cheering for you. I too had social anxiety and I often withdrew myself in crowds. 

[Jewel]

I hope it all works out for you @Renachelw. Baby steps.... ?

[Mary Beth]

@Renachelw

 

wishing you the best on your CI journey!

[Jdashiell]

@Renachelw

It is sad to hear of the ignorant people that tend to bully those of us with hearing loss. I can tell from your writing that you are not inept, rather well spoken.

Those of us here feel what you experienced and understand your pain.

Getting a CI is truly a life changing experience. I, for one, highly recommend getting one, or two.

You will also learn along the way how to educate those who are "ignorant" and not enlightened!

[Mary Featherston]

@Renachelw, @Jdashiell has a point.  I stopped taking crap off people a long time ago.  You can do it; you can do it and be completely polite.  Just firmly tell them that an inability to hear is not indicative of a lack of intelligence, and don't let them think they're being funny when they do stupid things like move their lips without making a sound.  People don't try that stuff on me anymore, but when they did I'd just say something like "gosh, that was just hilarious the first 40 or 50 times, but at this point, sorry, it's a bit stale".

In my experience once you pull people in they'll be on your side.  Instead of ridiculing you, they'll help.  I've had coworkers help me hear in meetings and conference calls for years.

Just don't lose your dignity or your sense of humor.  You'll be fine.