Do you ever feel nobody understands you and what you are going through!

[ratthebrat]

My boyfiend constantly makes comments that i just pretend i can hear or that i am ignoring him. But the real fact is, is that i am completely deaf in my right ear and cant see very well out of one eye. Somedays i wonder is he joking with me or does he not believe me that the doctor says i am deaf. Why would the doctor prescribe hearing aides if i am not deaf. The part that he don't understand is that yes i can hear out of one ear but if a person is not facing me i can't hear everything they say. therefore he thinks i should be able to hear everything because i have one working ear. Has any ever tried to explain this to a person with two working ears and succeeded on explaining it to them no matter how i put it to him he don't understand it at all. I wish i could make him understand

thank you comforting me and letting me know there are others out there.

thanks again

[HeadCase2]

rtb,
  I think it's hard for people who haven't experienced one sided deafness to understand its affects.  I have to remind my family members, every day,  that they have to walk on my hearing side if they want me to hear them.   
Regards,
 Rob

[pattibobatti]

Hi there,

It sounds like he isn't very sensitive to your problems!!  Maybe this can help you...

I had to have my cornea replaced after my surgery.  I cannot see out of that eye right now and I wanted  my husband to understand what it feels like to only see out of one eye.  I  taped up one of his eyes and asked him to walk around like that for awhile.  He was misserable!!!!!!

You could try my 'experiment' on your boyfriend!! Everything is much different when it is happening to you !!!

Pattibobatti

[ppearl214]

rat (gawd, I love that!)

First... welcome.

You know, there is an old saying of "someone doesn't understand until they walk a mile in my shoes"... and that clearly states what any of us (or anyone with any other form of medical or emotional issues) go through.  Regardless of this site or other "support" sites (heck, even watching the MDA telethon this past weekend), it reminds me that no one can truly understand what we go through unless they experience it as well.

My bf is the same way... can't understand some of the post-treatment issues I contend and no matter how much I share internet links or try to explain, I know he will never fully understand.

Thus, this board. This wonderful forum board.    You know what? I DO understand. I DO relate to what you experience. I DO know what it is to walk that mile in your shoes.

You can try to share as best as you can with those in your life, but always remember, it is us that truly do understand.  We will share info that you can pass along to your loved ones. We can point you in certain directions to help you with all that you are dealing.  We can share with you that life moves along just fine... and most of all, we can share the many hugs that are needed within this really awesome "family" that we have become.

Dang, this family is growing so much and not even a stretch mark for me!

Rat, hang in there.. and if it helps, try pointing your bf to this site... maybe that will help him understand all that you endure.. as well as let him see that there are many rallying for you during this journey. 

Remember... this is an obstacle.  An obstacle that must be endured... but over every obstacle is a positive outcome... Many of us are proof of it!


Hugz to you!
Phyl

[Pembo]

My husband began to understand how hard it is for me the day I went for my hearing test for the Baha. The audiologist let him sit in the booth with me while she tested my hearing and added feedback. It was then that he understood what it is like to hear the world and all the extra noise and not be able to discern any of it.

If I had a nickel for every person who said "Well at least you have the other ear" I'd be a rich woman.

I was at a friend's pool this summer and the kids were playing Marco Polo. I realized I can't play that anymore since I can't locate sound. I mentioned it to my friend and she was pretty taken aback that it was one of my many challenges.

Since my surgery I've learned to fill my life with people who make an attempt to understand or at least or empathetic. I've let the people go who just were clueless.

That said, I still have to remind my husband, often, that I can't hear what he's saying or it just sounds like blah blah blah to me.

We're all here together and I'm so grateful for this board.

[britbert]

Ratthebrat,

I would repeat (no pun intended) what the others have said.  My husband and family are very understanding, and they still forget that I can't hear very well.  One of my sisters, bless her sweet heart, always sits or walks on my right side so that I can hear her; but she is the only one who makes a special effort.  And I always have my husband sit on my left side (my deaf side) in social situations so that I can hear everyone else.  He understands if I have to turn my head all of the way around to hear him or if I say "what" a million times.  I often explain to people that if there is any background noise, I can't hear a specific noise, like someone talking to me.  My brain gets confused with so much happening.

I am 31 and I feel that I will have to deal with this for a LLOOOOONNNNNNNGGGGGGG time. 

But there are some benefits to single sided deafness.  I sleep on my "good" ear and then I don't hear so much noise at night (including the baby crying sometimes ).  And the other day, for fun, I had my five year old daughter and her friend blow a whistle really loud into my deaf ear.  They thought it was pretty funny that it didn't bother me.

Good luck with everything.
Brittany
ps my nickname when I was little was "Brit-the-brat-the-big-fat-rat"

[Kathleen_Mc]

ratthebrat: I can remember clearly one night the upset between my husband and I. Our son was a few months old and we had been living together only about 8 months, I sleep on my good ear out of nature so I had the monitor turned up loud so I could hear, the "white noise" got irritating to my husband and he got frustrated and got up and turned it down, I promptly got up and turned it back up, he got upset and I put it plainly "I am hearing impaired and if you can't live with the adjustments there must be for me you can't live with me"........I think that was the last time I ever heard anything to do with my hearing. The way I see it is we cannot change anything, we can adapt but so must others and this starts with aceptance.
If your boyfriend cannot acept that you are indeed hearing impaired and that means that you ARE HEARING IMPAIRED then that is his problem.
Kathleen

[tony]

Two thoughts
ONE-  I think one of us should write a book all about this
TWO - Explain to kinfolk that you are, to a degree, lipreading
- if they dont have your eye contact you probably are not able to listen
to them or understand.
Best regards
Tony

[tatianne]

ratthebrat, i feel the same way.
I feel that my family doesnt understand, the tend to downplay what im going through.
-Oh its ok, you will just have surgery and you will be fine.....which is true, i will be fine but i feel like they dont see the serious side of this
-Oh your ear is still ringing ? (i have told them millions of times it doesnt stop and probably never will and they still say this)
My ex husband doeosnt believe me thats its considered a brain tumour and he works in the ER !!
A doctor there told him its a benign condition that is solved with a small surgery......so.
Those around us dont like to see us at risk and I think its easier for them to look at things in the way they do. I just dont talk about it much with them anymore and i vent here with all of my pals.
ratthebrat, i am still to be treated, so i cant say i see things from your perspective but I definitly understand to some degree and if you ever need to talk, please just give me an e-mail.
Take care,
T
I

[Bob Partak]

This site is so fantastic because it gives all of us a chance to share.
I lost my left hearing due to an AN in 2004 at the age of 60. I was shocked when I ran into a fellow professional (DDS) who said to me - I lost my right hearing at age 11. WOW - can you tell where the birds are singing from ? He said YES. He also managed to get through professional school ( noisy classrooms and all) and is a very successful dentist today. This gives me the idea that over the long term the brain does reprogram to adapt to even severe changes. He doesn't remember his early problems related to becoming SSD. His only problem was folks sneaking up on him on his deaf side.  I hope this gives everyone a glimmer of hope.
Also, what helps me is wearing protective hearing earmuffs whenever I start a machine - lawn mower, grass trimmer, vacuum swepper, etc. I have one set for the house, and one for the garage. Keeping loud noises to a minnimum helps control my tinnitus and saves my good ear which about 75%.  I wish you all well.  Bob

[Patti UT]

RTB,
   I have come to the conclusion that "they" will never truely understand. As already mentioned on this thread. These wonderful people on this forum really are the only people who really DO KNOW where you are coming form.  Have your boyfriend look at WWW.theblackriver.net/wobbler/wobblercognitive.html  for a little insight on just some of what we deal with. The SSD is something that I think is so annoying to others, that it's hard for them too when you have to keep reminding them you just can't hear on that side.. My hubby has decided I have selective hearing (something he has been practicing for years, and he has the use of both ears). Because sometimes I can hear stuff and sometimes I can't, or I can't tell where the talking is coming from, or I only hear part of the sentence, etc. He thinks I am choosing what I want to hear. The part about sleeping on your good ear, It is a nice option to block out noise, but I worry about it when I am the only adult here and I am not awaken by things. The other night my dog was going bazerk pacing the floor barking for quite a while before my daughter finally woke me and said the dog had been doing this a long time. We got up to find a Moose in the back yard. At least my dog is doing her job, just wish I could hear her.
  Your BF, my hubby, and others around us are going to have to realize they too will have to adjust.
Good Luck
Patti UT

[Obita]

They don't understand because they can't.  They are not half deaf, maybe half blind, wobble walkers like we are.  Denise had her sister close her eyes and walk on a dock......she told her sis that that is how she feels all the time.  Her sister said:  are you kidding me????  Pattibobatti had her husband tape one of his eye shut for a time.  He couldn't stand it.  The next time someone looks at me goofy when I am spinning around in circles trying to fine the voice thats calling my name, I am going to hand out one ear plug, call their name and watch the spinning from behind a tree.  -    Have a good day everyone!!!    Kathy

[wind6]

I love the idea of taping an eye....maybe we should ask our significant others to block out an ear for a while too. I do try to understand that unless you personally have lived it you can not totally "know" what it feels like. I know I was clueless until it happened to me. The one thing I did always have was empathy though.
I often wonder if insensitivity is just others way of trying to avoid whats uncomfortable for them...not really a thought that they may make the other person feel a bit weird. I even sometimes feel people in my world think I should just try harder!!! I have squeezed my eyes as hard as I can but my ear STILL wont work!!!
Now, how about the changes with hearing aids? I am going today to have my fitting for my Cros. Is that really going to help me in the long run?
A final note and I hope I never forget to say this........Thank you all so very much. You are my safe place to land when I feel foreign in my our life. The only place I know I am understood, sometimes without saying much of anything. Hugs and Loves to you all. Sherry

[Windsong]

One answer  why (perhaps)  no one else understands what we are going through:

Reading this thread reminded me of some courses I took in existential phenomenology. In essence, what I recall that might pertain to this experience of ours, re ANS, is:

All experience is personal and individual.

An example in ordinary terms would be something like "oh. look. isn't the sky so blue today?" Meanwhile, the person you said that to, has no idea if he/she sees the same blue colour that you do.

Another example might be, "oh I have such a wicked headache today"....now, you might get some understanding and even some sympathy with that one as most people have had at least one headache of some kind in their lives.

Upshot is, according to all kinds of philosophers in this particular discipline, is that it's actually amazing that each of us finds love....

So how does all of this pertain to having an An and no one really understanding? basically, it's that unless there is some common aspect that is "shared" in the experience,  no one else can ever "get in your shoes", so to speak.

I know many of us have family that try, might be scared, might be doing what they think is best by not "dwelling" on any or all of the aspects of our Ans and treatment(s), all quite simply because they really have no idea what it is like. (besides not having a clue what to do or say)

This site offers lots of help in many ways. Not the least of which is tons of "understanding"...

Best wishes to all of you.
Windsong


ps sorry about the editing.... i haven't been able to type with correct spelling ever since my An got to a certain size.... must be brain/ finger messaging reason..

[Dealy]

Hey-I found something I can add my two cents worth. I had surgery in my left ear for a 1.5 CM back in 1988. It left me deaf. I remeber telling the doc-I can hear out of that ear. No he said your deaf. Well time passed and I adjusted. Her 17 years later-I am facing another AN in the Right ear. Boy was I blessed with one hearing ear-I would give anything to have my one ear hear normal again. Most people never knew I was deaf to begin with unless they talked on my left side-and I just simply turned my head. Yes-you are right people will never understand. My sister-in-law cannot figure out why I am not cured after having FSR. People will say-well did'nt you have surgery. No I had FSR. Some people look at you like your nuts or something. That is why these groups are so good-because we do understand. When you lose something-people grieve over that loss. There is no time limit. Hey-you cannot fix my problem-but understand my pain. So we do understand your pain. One day you hopefully will look back and learn something-appreciate every day and do not take for granted your physical attributes-no matter how insignificant they may be too some other people. Have a good evening all/