Why It's Not Helpful to Tell People "You're Lucky Your Tinnitus/Hyperacusis Isn't Worse."

[Red]

We know our tinnitus and/or hyperacusis could be worse! We know there is a difference between tinnitus and TINNITUS. I hear "You are lucky it isn't worse" all the time here, most often from long term members. This phrase is starting to become grating.

For me, this is very demoralizing to constantly read on the forums. I have been trying to cope with chronic conditions for 3 years now. I know that instead of getting better, I've gotten worse. I am extremely familiar. All the same, I've set aside my passions, my dreams, my career opportunities to prevent myself from worsening. I live in constant terror that things beyond my control will make me worse when I have so little left to give up (because I suffer from chronic pain as well). I try to get through every day with not making myself worse to the point where I feel like I'm a shred away from a mental breakdown. If I only had tinnitus it would be okay.

I could be a happy, functional person...but because I also have hyperacusis and chronic pain, the combination of multiple problems, regardless of their severity, makes it difficult for me to get through the day. Sadly, compared to the beasts of chronic pain and hyperacusis, tinnitus is my least bothersome condition. If it were to get worse I think I would seriously consider ending everything. When you say "You're lucky your tinnitus isn't worse" this is what I hear:

1. You can't get better, only worse. There is no reason to hope.
2. You will never have any semblance of a normal life.
3. You will get worse.

Everytime, everytime I read that statement I sincerely feel like I'm doomed. It's meant as a cautionary statement but it also comes off as very discouraging and self-destructive.

 

[Agrajag364]

We know our tinnitus and/or hyperacusis could be worse! We know there is a difference between tinnitus and TINNITUS. I hear "You are lucky it isn't worse" all the time here, most often from long term members. This phrase is starting to become grating.

For me, this is very demoralizing to constantly read on the forums. I have been trying to cope with chronic conditions for 3 years now. I know that instead of getting better, I've gotten worse. I am extremely familiar. All the same, I've set aside my passions, my dreams, my career opportunities to prevent myself from worsening. I live in constant terror that things beyond my control will make me worse when I have so little left to give up (because I suffer from chronic pain as well). I try to get through every day with not making myself worse to the point where I feel like I'm a shred away from a mental breakdown. If I only had tinnitus it would be okay.

I could be a happy, functional person...but because I also have hyperacusis and chronic pain, the combination of multiple problems, regardless of their severity, makes it difficult for me to get through the day. Sadly, compared to the beasts of chronic pain and hyperacusis, tinnitus is my least bothersome condition. If it were to get worse I think I would seriously consider ending everything. When you say "You're lucky your tinnitus isn't worse" this is what I hear:

1. You can't get better, only worse. There is no reason to hope.
2. You will never have any semblance of a normal life.
3. You will get worse.

Everytime, everytime I read that statement I sincerely feel like I'm doomed. It's meant as a cautionary statement but it also comes off as very discouraging and self-destructive.

It's very debilitating to suffer from more than one difficult condition and it can take a great deal of mental strength so give yourself credit

 

[jasonbourne]

Would you rather live in a fantasy world and hear lies? Tinnitus gets worse if you dont protect your hearing, simple. It will never get better, however, if you are really careful you can live the rest of your life with only slightly worsening tinnitus. If you are not careful, your tinnitus could increase massively in a year.

 

[Emperor-Drax]

It will never get better

And those of us that did get better and it completely vanished?

 

[Manny]

It will never get better, however, if you are really careful you can live the rest of your life with only slightly worsening tinnitus.

When I read positivity threads it really annoys me when people write that "it WILL get better" - just because theirs did. Everyone's different!

Same thing here. "It will never get better" is too absolute a generalization than to be accurate, so many people may find it very unhelpful.
Some people will get better, some will get worse and some will stay the same. I don't believe there is any solid data on the matter informing which is more likely.

And don't forget MuteButton may help us and is coming out soon, amen!
All the best

 

[GregCA]

It will never get better, however, if you are really careful you can live the rest of your life with only slightly worsening tinnitus.

This is statistically incorrect: it does get better in a majority of cases.
@Bill Bauer often links to a study showing this. I don't have it handy but I'm sure he will.

 

[jasonbourne]

When I read positivity threads it really annoys me when people write that "it WILL get better" - just because theirs did. Everyone's different!

Same thing here. "It will never get better" is too absolute a generalization than to be accurate, so many people may find it very unhelpful.
Some people will get better, some will get worse and some will stay the same. I don't believe there is any solid data on the matter informing which is more likely.

And don't forget MuteButton may help us and is coming out soon, amen!
All the best

but telling people it will get better is way more dangerous and irresponsible, thats what people dont get. Its as dumb as hell for instance if I told people not to worry about unprotected sex because I didnt get stds from it. Protecting yourself will always save you from a lot of stress, anxiety and misery in the future. The alternative is living in a bubble, and then if it gets worse youre screwed, for what? So you can for a small amount of your life live carefree? What if that person is only 20? Do you honestly think he can forget about his ears and not cause further damage? I suspect a lot of these unicorns and fairies people are old.

 

[jasonbourne]

This is statistically incorrect: it does get better in a majority of cases.
@Bill Bauer often links to a study showing this. I don't have it handy but I'm sure he will.

irresponsible.

 

[jasonbourne]

And those of us that did get better and it completely vanished?

then why are you still here?

 

[Manny]

Yes, I consider it very important to protect my ears from further damage.

 

[jasonbourne]

Yes, I consider it very important to protect my ears from further damage.

ok, now understand how toxic telling people it will get better is. Because it fucked me over hard. It made me complacent.

 

[Manny]

ok, now understand how toxic telling people it will get better is. Because it fucked me over hard. It made me complacent.

I am really sorry that happened to you.

 

[Agrajag364]

And those of us that did get better and it completely vanished?

Did yours vanish?

 

[Emperor-Drax]

then why are you still here?

I knew you'd ask this. Because I had a pretty big scare with this thing a few months ago and I'd like to stick around and see if others experience similar recoveries.

Plus I still have some intermittent ear pain, but that's becoming less frequent as time goes by.

 

[jasonbourne]

I knew you'd ask this. Because I had a pretty big scare with this thing a few months ago and I'd like to stick around and see if others experience similar recoveries.

Plus I still have some intermittent ear pain, but that's becoming less frequent as time goes by.

so you had temporary tinnitus? So what exactly is your point for us with chronic tinnitus?

 

[jasonbourne]

I am really sorry that happened to you.

its done now. Only one way to end my pain. I just dont want others to make the same mistake. I will get the silence I deserve soon enough.

 

[Emperor-Drax]

so you had temporary tinnitus? So what exactly is your point for us with chronic tinnitus?

Mine lasted for two and a half months following an acoustic trauma from a DIY accident, and I was terrified it'd become a lifelong, chronic illness. It was loud and multi-toned, like a dentist drill mixed with a wind chime. But then it faded and finally vanished. Still, it was such a scare that I still feel psychologically traumatised by the ordeal. Reading this forum guides me through that and I like to see what sorts of advice can be offered by veterans so I can prevent further mistakes and lapses in judgement (which I'm a proven DIY disaster with two incidents under my belt, the other being a lower back injury that was my own fault!).

Dude, I just had a quick stalk of your posting history, and it's a no brainer that you're in a dark and disturbing place. But spreading nocebo posts like "it'll never get better" is resignation that offers no real guidance. Your story is a harrowing one, but everyone who gets this affliction will have different outcomes.

 

[jasonbourne]

Mine lasted for two and a half months following an acoustic trauma from a DIY accident, and I was terrified it'd become a lifelong, chronic illness. It was loud and multi-toned, like a dentist drill mixed with a wind chime. But then it faded and finally vanished. Still, it was such a scare that I still feel psychologically traumatised by the ordeal. Reading this forum guides me through that and I like to see what sorts of advice can be offered by veterans so I can prevent further mistakes and lapses in judgement (which I'm a proven DIY disaster with two incidents under my belt, the other being a lower back injury that was my own fault!).

Dude, I just had a quick stalk of your posting history, and it's a no brainer that you're in a dark and disturbing place. But spreading nocebo posts like "it'll never get better" is resignation that offers no real guidance. Your story is a harrowing one, but everyone who gets this affliction will have different outcomes.

You were the rare case my friend, stop acting like youre the norm. Btw, since your original tinnitus was caused by noise, take my advice. Or it could come back with a vengence when you become drunk one day and go to a loud bar. Your ears are in self destruct mode as of now.

Itll never get better is real, I dont spread fantasy. If youve had tinnitus for like a year, its done.
Most people that say after a year it gets "better", dont mean physically, they mean their reaction.

 

[Emperor-Drax]

You were the rare case my friend, stop acting like youre the norm. Btw, since your original tinnitus was caused by noise, take my advice. Or it could come back with a vengence when you become drunk one day and go to a loud bar. Your ears are in self destruct mode as of now.

I have no idea what the "norm" is. But from what I've gathered, most people do eventually recover sooner or later.

And eh, good thing I don't drink then.

 

[jasonbourne]

I have no idea what the "norm" is. But from what I've gathered, most people do eventually recover sooner or later.

And eh, good thing I don't drink then.

I know what the norm is. Dude youve had tinnitus for 2 months and arent suffering anymore, ive been doing extensive research since early 2017, pls get off your high horse. It is not possible to not hear tinnitus anymore after a certain period of time. Recovery is "getting over it", until it gets worse. Stop with the misinformation.

and yes, alcohol is shit.

 

[Emperor-Drax]

Okay, I'll give you another one.

I lost my virginity (to an older woman) in 2006, I was 21. But being an excited chap, I neglected using protection. So what happened afterwards? I hit the internet and the HIV forums like crazy and researched every damn tidbit imaginable! I got a test done at the three month mark, to which I was negative. But I still couldn't get over this panic I had! And friggin 12 years later, I still occasionally prowl the HIV/AIDS forums like a hypochondriac lunatic because the very idea of being afflicted with a disease of that magnitude as a result of one lapse of judgement hit me so hard.

What's my point in all this? I dunno, I'm a bit sick in the head. And so I'll probably be a haunt at tinnitus forums for a long time to come.

 

[jasonbourne]

Okay, I'll give you another one.

I lost my virginity (to an older woman) in 2006, I was 21. But being an excited chap, I neglected using protection. So what happened afterwards? I hit the internet and the HIV forums like crazy and researched every damn tidbit imaginable! I got a test done at the three month mark, to which I was negative. But I still couldn't get over this panic I had! And friggin 12 years later, I still occasionally prowl the HIV/AIDS forums like a hypochondriac lunatic because the very idea of being afflicted with a disease of that magnitude as a result of one lapse of judgement hit me so hard.

What's my point in all this? I dunno, I'm a bit sick in the head. And so I'll probably be a haunt at tinnitus forums for a long time to come.

dude thats not even the same thing lol. Tinnitus is not mental, its REAL and the reaction to say, mild tinnitus would be mental so I guess that makes sense in relation to your stroy (but researching tinnitus is a good thing). Once it gets to a certain instrusive level however, its now a purely physical thing that has mental effects.

Stopping tinnitus at mild is paramount, I cant stress this enough. It cost me my life.

 

[Emperor-Drax]

Well just don't go banging metal objects with mallets, kids.

 

[jasonbourne]

Well just don't go banging metal objects with mallets, kids.

I agree

 

[Wolfears]

dude thats not even the same thing lol. Tinnitus is not mental, its REAL and the reaction to say, mild tinnitus would be mental so I guess that makes sense in relation to your stroy (but researching tinnitus is a good thing). Once it gets to a certain instrusive level however, its now a purely physical thing that has mental effects.

Stopping tinnitus at mild is paramount, I cant stress this enough. It cost me my life.

How bad is yours on the 1-10 scale right now?
Does it stay the same or does it fluctuate?

 

[Red]

Would you rather live in a fantasy world and hear lies? Tinnitus gets worse if you dont protect your hearing, simple. It will never get better, however, if you are really careful you can live the rest of your life with only slightly worsening tinnitus. If you are not careful, your tinnitus could increase massively in a year.

I don't live in a fantasy world. I live in a dark, bleak place where I have very little to help me cope with this condition thanks to chronic pain taking them all away. I already know what you said. This is the reason why many people with T/H develop anxiety problems or get worse anxiety problems. We know we can get worse, as stated. Your stories are just fine, tips and advice are even better. You don't need to put someone down when the former two are enough.

 

[jasonbourne]

How bad is yours on the 1-10 scale right now?
Does it stay the same or does it fluctuate?

it fluctuates depending on anxiety levels, but the base tinnitus is recognizable and always the same. Im not going to rate it, because I think a lot of people that say 9/10 would be like 5/10 on my scale. Im just going to say thats its too intrusive to live with.

 

[jasonbourne]

I don't live in a fantasy world. I live in a dark, bleak place where I have very little to help me cope with this condition thanks to chronic pain taking them all away. I already know what you said. This is the reason why many people with T/H develop anxiety problems or get worse anxiety problems. We know we can get worse, as stated. Your stories are just fine, tips and advice are even better. You don't need to put someone down when the former two are enough.

I never put you down at all nor was that intention. If you want to always hear positivity feel free to visit reddit and post in wholesomememes or something and go see a good therapist.

edit* youre also not the only one with a wombo combo of problems

 

[Wolfears]

it fluctuates depending on anxiety levels, but the base tinnitus is recognizable and always the same. Im not going to rate it, because I think a lot of people that say 9/10 would be like 5/10 on my scale. Im just going to say thats its too intrusive to live with.

I hear you bro....I wish I could make it better but nothing I can say will lower the volume.

 

[coffee_girl]

I notice for a lot of tinnitus sufferers on the forums, they act like tinnitus is some kind of competition. Oh, that person has mild/moderate tinnitus...let's make them feel insignificant, let's discredit their suffering. These are then the same people who cry and moan about their condition when it is worse then lash out at others for not sympathizing or sharing an opinion in the way that they want.