Changed My Mind on My Tinnitus

Yesterday I had my ENT app. in London.
While I was waiting I noticed a little girl (13yo) sitting next to me. All of a sudden she asked me why I was there.
I told her that I was there cause of my ringing in the ear and clogged sensation.
The she looked at me and she asked again: "Ok! But why are you here?". I looked at her and I explained to her again.
She looked at me and she smiled, then she said: "I have a brain cancer since I was 11yo, now the cancer attacked my ear and eyes, I had 3 surgeries but I do not have tinnitus! I wold like to have just the ringing like you!"...this was like a BIG moral slap for me and make me think about all my situation.

We have to consider ourselves lucky that we have JUST tinnitus and maybe we will have to change our attitude towards this, thinking that there is people that are in a worse condition.

We can still live our lives, we just have to keep our chin up and keep hoping and help the research.

Love u all

 

Agree , i had a similar experience when i went to visit a friend in hospital recently. Some peopel there with broken back/neck, paralysed. Was a real eye opener.

 

A real eye opener that for you and for us. This T makes us look too internally and maybe hearing things like this puts things into real perspective. Was having a tough day today and like you this is a slap and wake up call.
Thanks for sharing

 

Watched a programme on TV last night on diabetes (Panorama). That is some serious shit. Tinnitus is a bummer but at least I can walk and see.

 

Sudden deafness in one ear and constant tinnitus upended my life three years ago. It is the worst thing that has ever happened to me but I have always understood that far worse things are happening to other people. My husband's sister was diagnosed with a genetic neurological disease around the same time that I lost my hearing. My sister-in-law has Huntingtons disease which causes involuntary body movement and dementia and will slowly kill her. There is no cure. My husband had to undergo testing to determine if he also carried the defective Huntingtons gene. If he were to test positively, he would also suffer and die from it and our children and grandchildren would be at risk of inheriting the Huntingtons gene as well. Thankfully, my husband does not carry the defective gene.
That little girl in the ENT waiting room is probably going to lose her battle with cancer after years of suffering and her parents are suffering right along with her. I still think there should be a better response from ENT doctors who tell us to learn to live with tinnitus but if we consider all of the horrible conditions these doctors see, then maybe we can be more forgiving.

 

While it is nice to put things in perspective, I think it is not a good idea to compare afflictions in this way. The experience of an affliction is a very personal thing, and as we are all different some persons can handle a lot more than others.

In my opinion, we should prevent creating the situation where people will say: "Hey, why are you complaining? You only have Tinnitus while person A and B have cancer". This kind of thinking is exactly what creates the reason a lot of people with Tinnitus (or any other subjective condition) can be in a very dark place. Of course, objectively seen Tinnitus is not life-threatening, at least not directly, but depending on the afflicted person and the severity of the Tinnitus-perception it can be as debilitating as any other condition. It is due to this subjectivity we cannot and should not compare conditions in this way. It's apples and oranges really.

 

I find that comparing "conditions" is more of a philosophical topic.
Someone with truly intrusive tinnitus can be in an extremely dire situation, more so than cancer patients or whatever else.

 

With tinnitus you DO NOT DIE! This little girl will die in about 1 year as her mother said to me. So pls!

 

Well, I'm not 100% sure about that either.
You won't die (well, you might if the T is caused by serious brain injury, MS, undetected acoustic neuroma, vascular abnormalities, (insert serious condition), etc.
And people off themselves from time to titme.
Sure, the experience you had today changed your perspective but it might mean nothing to the next person.
So pls! Understand that dying in one year might be an amazing perspective to someone who thinks about suicide every other moment of his/her life.

 

Obviously I want to say that as a T sufferer I know that T can cause a looot of distress and even worse and I do not want absolutely to say that we have to "Get used to it"!

 

Yes, we all realize that. The girl probably will not make it and that is very saddening. Cancer is a horrible condition to have.

However, you just cannot go into judging subjective conditions and compare them to other, more objective, conditions. No one can gauge a subjective condition for a person reliably. In fact, this is one of the big problems in diagnosing and treating Tinnitus.

I may have it mild and deal with it fairly well, you may have it mild too and judge from that position that cancer is way worse. In my opinion it's a wrong way of reasoning though. I can imagine that there are people whom have a way worse severity of Tinnitus than I have now. I can imagine they could be at the end of their rope and death doesn't sound like an unattractive option to them and realize they might even go there... The problem with such victims is that it is consequently blamed on "depression" or other issues and hence the severity of the Tinnitus-issue never gets out. It can actually drive people to kill themselves, but the condition and it's possible outcomes are quite hidden in society. It is an invisible epidemic.

Cancer is horrible, no one will disagree with that. It can kill people unwillingly and we should pursue a cure there as well. It is unacceptable children have to die because of such a condition. However, Tinnitus CAN be horrible too, and it can drive people to do things they would never do without it.

 

This. Thank you.

I realize that people have horrible diseases. I know some and I feel for them every day. It doesn't make my suffering (severe T + H + HL) more acceptable.

 

A while back I had a conversation about phantom pain with my niece who lost her left arm to bone cancer. The subject turned to tinnitus and I explained that it is often referred to as a phantom pain syndrome.

When I explained the loudness of my brain noise she was horrified. She than stated she would rather have her situation than tinnitus.

But I felt rather awful talking about my long journey with tinnitus compared to her situation.

Several years later now she is healthy, cancer free and living a great life with two kids. More amazing is that you almost forget she doesn’t have a left arm because she does everything with her one arm and never complains.

She said having the constant noise in the brain would make her life more difficult.

Sometimes this affliction is just complicated.

 

This is a nice story @Starthrower. It perfectly illustrates the complexity of this condition and the very personal journey it is.

 

At my age I'd happily trade 20 years of my life for this to go away completely. I'd take the estimated 30-35 years of quality life than get 50 of torture - I say that even though my condition has GREATLY improved.

It's bullshit to say just b/c someone else has a worse problem you should be happy all you have is a really shitty one. There is always something worse. You could ahve told that little girl she should be happy all she has is juvenile cancer - she could have had progeria.

 

This can go to a real dark place..not even worth comparing which is worse or which i would rather have...all i can say is thank God i have the ability to still function and do what i need to live my life...i just hope it never gets worse and the scary part about that is there is nothing i or anybody else can do to stop it.

 

@DonaldDuck75 Unfortunately tinnitus isn't so simple as some people think. Tinnitus comes in many forms and intensities and no two people experience it the same. When it is severe and intrusive it can be a very debilitating conditon that can seriously affects a person's state of mind. Just Google tinnitus and see what people are capable of doing when it is severe. When tinnitus is severe and intrusive it is as serious and debilitating as any other medical condtion.
Unless a person has exprienced tinnitus in the way I've described they will never understand.
Michael

 

Many have and many will actually!
But this sad reality of true tinnitus suffering and consequences is brushed under the carpet exactly because of people like you who compare what they have with the rest of us!

 

@DonaldDuck75

Well said Valeri. Anyone that thinks tinnitus is an easy ride they are mistaken. I was medically retired from my job many years ago because of this condition and it's been a long hard road back.
Michael

 

Na!! This tinnitus stuff is a walk in the park!! It's even EASIER if you go DEAF in both ears! No worse than being bit by a mosquito!! If your like me, you ONLY suffer job loss, financial ruin, disability funding that won't even pay the rent, added and extra costs to try to get help, anxiety, stress, depression, thoughts of "checking out", lack of support from others cause you LOOK normal, told to just live with it daily........... hey, it's a walk in the park buddy!! Could be worse........... yea...........

 

We all know things can be worse. Doesn't make this any easier on us!

 

I feel compassion for anyone going thru anything worse than I am. I see it every day. Especially the young!! It will actually help to keep your emotions in check but we all need to keep fighting towards better education, cures and understanding.

 

I no longer see dying as the worse possible outcome that can happen to a person.
We've been cursed to have a condition that doesn't kill you directly but makes you want to be dead every day.
On top of that the lack of understanding not only from doctors but fellow tinnitus "sufferers" who are constantly comparing apples and oranges and deliberately minimise what some of us have.
Just because I walk and talk and don't have terminal cancer (I wish I got it instead of "just ringing") doesn't mean my life is ok.
Far from it....

 

I agree in many ways. I am not afraid of dying. Never really have been for that matter. I learned at a very young age that this is going to happen to everyone. This being said, I also know we only have a short time here as compared to the age of man. I also know I am but one little person in a world of almost 7.5 Billion people. When I am gone, my name will be forgotten in 2 or 3 short generations. This ball of water and rock we call earth really is beautiful tho. May as well try to get in as many years as possible. I also am not an EXTEND YOUR LIFE freak! I'm going to enjoy things while I'm here. I'm going to order that greasy pizza now and then. I have jumped out of airplanes with fabric tied to my back and floated down to earth. ( Total rush by the way ). I won't live my life on a treadmill and health food store to get a few extra years........maybe! I will look after myself enough to feel decent! I may be deaf, and suffer raging tinnitus, but I still have plans. Not the same plans I once had, just new plans! Still things I enjoy doing and seeing, places I like visiting, people I enjoy chatting with, kids I want to see grow up etc. When my time comes to leave mother earth, I will embrace it fully. I will be the guy who died with a smile on his face even with all the shit I have been thru!!

 

Well said Mike!

 

Cheers!!

 

You just cant compare, everyone is their own journey.
You just cant compare since you cant Switch it.

i think everyone can think and understand that there is always going to be someone with a bigger problem than you.
thats sound more reasonable.

 

Donald, whatever others think (and I do agree with them I must admit), your own experience is still yours alone, and if this moment of inspiration has given you a new perspective, then roll with it and best of everything to you for that. If its something that propels you forward and makes you the better for it, then thank your God or your Karma for the opportunity to be there to hear that. Don't feel too beaten around the ears for wanting to share it either. Its an observation many of us make at times and its all part of coming to terms.

 

Hmm i'd take the static noise in my ear over being paralaysed, sorry if thar offends anyone.

 

If an experience allows an individual to better deal with their own circumstances, then it can only be a good thing. However, if I want to see people in terrible life situations, I only have to turn on the news, but no matter how awful life may well be for others, there is no change to my own suffering.