Things People Say When You Tell Them You Have Tinnitus

[Leila]

They're insulting you off the heavy assumption that your tinnitus experience is like theirs, which doesn't make any sense.

Yeah, I know... It's because people compare things to what they know, which works well in most cases because a broken bone is a broken bone, a toothache a toothache, a papercut a papercut, ... So it's only logical that they would resort to this very pattern when it comes to tinnitus, too. Unfortunately, the only way for them to learn about the nightmare that is severe tinnitus is to experience it themselves, which is something I wouldn't wish on my worst enemy.

 

[Elmer B Fuddled]

After 4 years of this constant noise, and trying to explain the condition and what goes on in the head, I finally realized it's not worth the time or trouble to explain. It's not for sympathy we explain.

 

[JohnFox]

"Have you tried those gummy bears yet?"

 

[Sayeed]

"Cool!"

 

[Bart]

That's not all of it. I have chronic prostatitis now and I am in pain every day. Painkillers make my tinnitus worse. I can't take anything for pain. Then I need to be on a long course of antibiotics, Doxycycline or Ciprofloxacin (both can cause or worsen tinnitus). I can't take any of them. I have made it until now but I don't think can push any further. I can't take ototoxic medication. I am not in a position to experiment.

I have chronic prostatitis as well and sometimes need to take Doxycycline to deal with flare ups. Doxycycline does sometimes seem to spike it but not permanently. Remember that the stress from pelvic pain causes stress that can also worsen tinnitus.

The thing with chronic prostatitis is that it's hard to treat but between flare ups there is no pain. You don't really need antibiotics most of the time but sometimes you do as the bacteria can swarm out.

Usually treatment of chronic prostatitis is unpredictable and long. My urologist wants me to take Doxycycline for six to twelve weeks! This cures 75% of people with this illness but even than there are no guarantees so I simply refuse to take it so long even if I risk the bacteria become resistant to antibiotics.

Even without antibiotics you can go years without major flare ups, but, due to some recent poor life decisions, I suffer from another major flare up right now, unfortunately.

 

[Joey72]

"oh [NAME], you're such a p*ssy"

Work colleague, after I returned to work from a week long absence, not having slept more than 30 minutes a day, and wondering if I ever would again, due to newly onset severe tinnitus.

"I mean, if we all took time off work just because of a little ringing..."

View attachment 47822

Doctor, refusing to provide my employer with a sick note justifying my week long absence from work, due to newly onset severe tinnitus.

Wow!

 

[sakrt]

Believe it or not, I was given - ANOTHER - $$$ bottle of the hearing and tinnitus "miracle cure". Oh Boy! SAME shit, but different colorful sticker-name for 2022-2023. Happy New Year!

A pattern is, no one even bothers to READ the labels, which basically contains the same ingredients e.g., Ginkgo biloba, vitamin E etc. as in their "low energy" and sexual dysfunction bottles. Aaaand of course, when tried to point this out for the umpteenth time, to be labelled as being negative, not trying hard enough and comparing me to the joyous "honest reviews" from dancing seniors in their ads. "If it works for them and they can do it, you can too"! Well, the best thing again... I've gone "back to silence".

 

[Stuart-T]

I have chronic prostatitis as well and sometimes need to take Doxycycline to deal with flare ups. Doxycycline does sometimes seem to spike it but not permanently. Remember that the stress from pelvic pain causes stress that can also worsen tinnitus.

The thing with chronic prostatitis is that it's hard to treat but between flare ups there is no pain. You don't really need antibiotics most of the time but sometimes you do as the bacteria can swarm out.

Usually treatment of chronic prostatitis is unpredictable and long. My urologist wants me to take Doxycycline for six to twelve weeks! This cures 75% of people with this illness but even than there are no guarantees so I simply refuse to take it so long even if I risk the bacteria become resistant to antibiotics.

Even without antibiotics you can go years without major flare ups, but, due to some recent poor life decisions, I suffer from another major flare up right now, unfortunately.

Chronic prostatitis - what are the symptoms? I sometimes have a slight brownish colour to my semen (what little I produce) which I have had for years. I sometimes think there is some infection which comes and goes.

 

[Stuart-T]

I don't really tell people.

I told my son - as I wanted to urge him to avoid night clubs etc.

My mum I told - she said - oh that's just the sound of your heart - I get that too.

I told my doctor when he gave me some anti-inflammatories for a tendon issue I have and I asked if it might help my tinnitus. He said no, it won't help and added "I have it too - damned nightmare."

I asked my son not to tell my ex wife as she will say "you see - god is punishing you for not staying with me."

 

[bobvann]

At my GP's a few weeks back, I was trying to explain the desperation people have & lack of real resources. I mentioned how it was accepted as a condition to end one's life by VAD, how 3 to 4 people on a forum I frequent has taken their own life, and that I need help with this. All he could respond with was "should I be worried about you?", completely missing the point.

 

[Bart]

Chronic prostatitis - what are the symptoms? I sometimes have a slight brownish colour to my semen (what little I produce) which I have had for years. I sometimes think there is some infection which comes and goes.

For me, mostly just pelvic pain, which can be severe at times, that comes and goes.

 

[ZFire]

The last ENT I visited asked me if I was hearing voices.

 

[NiMo]

In my opinion most people won't feel too deeply about others' issues because they're so focused on their own. Honestly, myself included. We can give to charity and feel briefly for others, but if it's not any issue affecting our children, spouse or immediate family then we don't generally put a lot of effort in to understand and console.

 

[beefling]

Me: *trying to explain the slowly but constant worsening, despite taking precautions, and the fear of how bad it could potentially get before a viable treatment hits the market*

Mum: *condescending and ignorant about severity of the condition, tries to brush it off like it's something anyone can get used to no matter how bad it gets* "I have problems too you know! I get really bad dry mouth in the middle of the night. I wake up and have to drink some water."

Me:

 

[ECP]

I got tinnitus and hyperacusis because I made the mistake of working as a caregiver for an elderly woman who was nearly deaf in both ears. She shouted constantly, even when she was right next to me. I kept begging her to stop, but she was too deaf to hear me, so I quit asking her to lower her voice and I just learned to tolerate the noise, not realizing that she was slowly causing damage to my hearing.

Can you guess what she said to me on the fateful day I tried explaining to her I could no longer work for her because of the damage done to my ears?

She had the gall to tell me that she'd had chronic diarrhea ever since the last time she had seen me. I was speechless at how self-centered she was. She had destroyed my health by shouting into my ears at close range, and instead of expressing some kind of polite concern for my health, she was trying in a not-so-subtle way to make me feel guilty for "abandoning" her.

The most common response I get from people who don't have tinnitus and to whom I have to explain what it is, is this: "Oh that would drive me crazy." Yeah, super helpful. In addition to others, I had a very good friend and my cousin both say that to me.

Today, during my ENT appointment, I was describing to my doctor how my tinnitus had changed from a seashell echo sound to a pure tone ring. He proceeded to tell me a story of one of his patients taking out his hearing aids and how his hearing aids were ringing really loudly but because his patient couldn't hear, he couldn't hear the doctor telling him to turn his hearing aids off. So he said he went through the entire exam while they were ringing. He said at the end of the exam he had the worst headache. Are you kidding me? Why on earth would you say that to somebody who just told you that they have that same noise and they can't shut off like a hearing aid.

People never cease to amaze me and not in a good way.

What are some of the things you all hear from others?

@Forever hopeful, I have a story for you that is similar to the anecdote your ENT shared with you.

When I was still working for that emotionally manipulative woman who was nearly deaf, she had me drive her to a dental appointment that was thirty minutes away. During the car ride, her hearing aid started shrieking like a banshee, but she was unable to hear it. I asked her repeatedly to either turn the hearing aid off or remove the battery, but she couldn't hear me, so I gritted my teeth and kept on driving. By the time we got to the dentist's office, my ears were burning, and I had laryngitis and a headache from shouting at her.

In the waiting room of the dentist's office, her hearing aid was still shrieking loudly, and everyone kept giving us dirty looks because they knew the sound was coming from our general direction. I was too exhausted to say anything, so I just sat there feeling drained, certain that the dentist and the dental hygienist would say something to her so that I wouldn't have to.

When it was her turn to be seen by the dentist, I breathed a huge sigh of relief. Finally, I could get some peace and quiet.

Or so I thought. As it turns out, her hearing aid was so loud that I could still hear it from the waiting room. Ugh.

An hour later, when she came out to waiting room again, her hearing aid was still screaming loudly. WTF? Why hadn't the dentist and dental hygienist put a stop to this?

In the parking lot, I refused to get into the car with her. I shouted, louder than I ever had in my entire life, that her hearing aid had been making a noise for nearly two solid hours and I would not get into the car with her until she turned it off. I was mortified because this dental practice was in the middle of a suburban strip mall and I was sure that anyone within earshot would think I was committing elderly abuse.

She still couldn't hear me, so I shouted again and again and again. Now I was starting to get a little scared because I was really making a scene and I was afraid that somebody in the parking lot of the strip mall would call the police on me.

Eventually, I was able to shout loud enough for her to understand that her hearing aid was making a loud noise, and instead of taking me seriously, she laughed in my face. She said that the dentist and the hygienist had both heard a high-pitched buzzing sound and they couldn't figure out what it was, so they turned all of their equipment off-- the drill, the X-ray machine, the dental cleaning tools, and the tube that sucks saliva out of patients' mouths. They never did figure out which piece of equipment was causing the sound, so they gave up investigating the source of the sound and went straight to work on her teeth, never realizing that the noise was coming from her hearing aid.

I made her turn the hearing aid off, and on the ride back to her house, I asked her not to speak to me because my ears were on fire and my throat hurt. With reluctance, she complied with my wishes, but it was obvious that she still didn't care about how much pain I was in. It was all a hilarious joke to her, and she couldn't understand why I didn't think it was funny.

To this day, she still doesn't care about the damage to my ears. As far as she's concerned, the real tragedy of our working relationship is the diarrhea that she suffered from the stress of losing me as her caregiver.

 

[Forever hopeful]

I got tinnitus and hyperacusis because I made the mistake of working as a caregiver for an elderly woman who was nearly deaf in both ears. She shouted constantly, even when she was right next to me. I kept begging her to stop, but she was too deaf to hear me, so I quit asking her to lower her voice and I just learned to tolerate the noise, not realizing that she was slowly causing damage to my hearing.

Can you guess what she said to me on the fateful day I tried explaining to her I could no longer work for her because of the damage done to my ears?

She had the gall to tell me that she'd had chronic diarrhea ever since the last time she had seen me. I was speechless at how self-centered she was. She had destroyed my health by shouting into my ears at close range, and instead of expressing some kind of polite concern for my health, she was trying in a not-so-subtle way to make me feel guilty for "abandoning" her.

@Forever hopeful, I have a story for you that is similar to the anecdote your ENT shared with you.

When I was still working for that emotionally manipulative woman who was nearly deaf, she had me drive her to a dental appointment that was thirty minutes away. During the car ride, her hearing aid started shrieking like a banshee, but she was unable to hear it. I asked her repeatedly to either turn the hearing aid off or remove the battery, but she couldn't hear me, so I gritted my teeth and kept on driving. By the time we got to the dentist's office, my ears were burning, and I had laryngitis and a headache from shouting at her.

In the waiting room of the dentist's office, her hearing aid was still shrieking loudly, and everyone kept giving us dirty looks because they knew the sound was coming from our general direction. I was too exhausted to say anything, so I just sat there feeling drained, certain that the dentist and the dental hygienist would say something to her so that I wouldn't have to.

When it was her turn to be seen by the dentist, I breathed a huge sigh of relief. Finally, I could get some peace and quiet.

Or so I thought. As it turns out, her hearing aid was so loud that I could still hear it from the waiting room. Ugh.

An hour later, when she came out to waiting room again, her hearing aid was still screaming loudly. WTF? Why hadn't the dentist and dental hygienist put a stop to this?

In the parking lot, I refused to get into the car with her. I shouted, louder than I ever had in my entire life, that her hearing aid had been making a noise for nearly two solid hours and I would not get into the car with her until she turned it off. I was mortified because this dental practice was in the middle of a suburban strip mall and I was sure that anyone within earshot would think I was committing elderly abuse.

She still couldn't hear me, so I shouted again and again and again. Now I was starting to get a little scared because I was really making a scene and I was afraid that somebody in the parking lot of the strip mall would call the police on me.

Eventually, I was able to shout loud enough for her to understand that her hearing aid was making a loud noise, and instead of taking me seriously, she laughed in my face. She said that the dentist and the hygienist had both heard a high-pitched buzzing sound and they couldn't figure out what it was, so they turned all of their equipment off-- the drill, the X-ray machine, the dental cleaning tools, and the tube that sucks saliva out of patients' mouths. They never did figure out which piece of equipment was causing the sound, so they gave up investigating the source of the sound and went straight to work on her teeth, never realizing that the noise was coming from her hearing aid.

I made her turn the hearing aid off, and on the ride back to her house, I asked her not to speak to me because my ears were on fire and my throat hurt. With reluctance, she complied with my wishes, but it was obvious that she still didn't care about how much pain I was in. It was all a hilarious joke to her, and she couldn't understand why I didn't think it was funny.

To this day, she still doesn't care about the damage to my ears. As far as she's concerned, the real tragedy of our working relationship is the diarrhea that she suffered from the stress of losing me as her caregiver.

I am sorry that happened to you. I would have ripped the thing out of her ear. Did you have your heating checked? Did your hearing her worse?

I hate when people hug me because I know they're gonna say something and it's going to be right in my ear.

 

[ECP]

I am sorry that happened to you. I would have ripped the thing out of her ear. Did you have your heating checked? Did your hearing her worse?

I hate when people hug me because I know they're gonna say something and it's going to be right in my ear.

@Forever hopeful, my hearing definitely isn't what it used to be.

I know what you mean about hugs. My husband always says, "Can I give you a quiet hug," i.e., "I'm going to hug you and I promise not to say anything while I do it."

For people like us, silence is an underrated love language.

 

[Ryan Scott]

Me: *trying to explain the slowly but constant worsening, despite taking precautions, and the fear of how bad it could potentially get before a viable treatment hits the market*

Mum: *condescending and ignorant about severity of the condition, tries to brush it off like it's something anyone can get used to no matter how bad it gets* "I have problems too you know! I get really bad dry mouth in the middle of the night. I wake up and have to drink some water."

Me:
View attachment 53900

Me: I'm just fighting everyday trying to learn how to live with this.

Dad: It's not like you have cancer, it's not that bad.

 

[Mattv]

So today I saw a world renowned neuro/otologist at Massachusetts Eye & Ear. And by world renowned I mean that he is an educator and speaks at national/international conferences etc. Very nice man.

This is probably the doctor I have. I live in Boston. Yep, pretty useless. I will say that I have tinnitus pretty bad, and although I dislike it greatly, I can't see why people get so totally freaked out by it except that other emotional, psychological issues are also involved. I had about a three month freak out, then I just got on with my life.

 

[tpj]

This is probably the doctor I have. I live in Boston. Yep, pretty useless. I will say that I have tinnitus pretty bad, and although I dislike it greatly, I can't see why people get so totally freaked out by it except that other emotional, psychological issues are also involved. I had about a three month freak out, then I just got on with my life.

If you have just got on with your life, why are you even here? Please stop downplaying other people's experiences. You have absolutely no idea what their tinnitus is like. Have some empathy and some understanding that not everyone is like you.

Also, the comment about other emotional, psychological issues being involved is completely insulting.

 

[Mattv]

If you have just got on with your life, why are you even here? Please stop downplaying other people's experiences. You have absolutely no idea what their tinnitus is like. Have some empathy and some understanding that not everyone is like you.

Also, the comment about other emotional, psychological issues being involved is completely insulting.

Why am I here? I have severe tinnitus, and I would rather not have it. I keep hoping to see some sign that there will be an effective cure. Why is pointing out mental illness insulting? Cancer is good, but mental illness is bad?

 

[tpj]

Why am I here? I have severe tinnitus, and I would rather not have it. I keep hoping to see some sign that there will be an effective cure. Why is pointing out mental illness insulting? Cancer is good, but mental illness is bad?

Because you imply that people who are "freaked out" by their tinnitus must have some emotional or psychological issue.

Tinnitus can be such a devastating and life destroying condition that has absolutely nothing to do with mental illness.

 

[Mattv]

Because you imply that people who are "freaked out" by their tinnitus must have some emotional or psychological issue.

Tinnitus can be such a devastating and life destroying condition that has absolutely nothing to do with mental illness.

I'm sorry it is for you, but I would remind people it does not need to be for all. I live quite happily, even though I have very loud tinnitus. Not everyone 'suffers' tinnitus. Many of us just 'live' with it.

 

[DaveFromChicago]

Because you imply that people who are "freaked out" by their tinnitus must have some emotional or psychological issue.

Tinnitus can be such a devastating and life destroying condition that has absolutely nothing to do with mental illness.

Perhaps Mattv should watch the movie "Tinker, Tailor, Soldier, Spy"; a captured English agent is tortured by being tied to a chair and forced to wear headphones that emit a shrill tinnitus sound.

How is it possible to "live quite happily" with this when it was routinely used as a method of torture by the KGB?

I also am personally very insulted by Mattv's inexcusably glib comment that anyone who "suffers" from this must by definition have other debilitating emotional conditions, since apparently tinnitus alone (no matter how catastrophic) could not possibly be the sole reason.

The fact is that I myself never had any emotional illness issues before I got this.

Perhaps I also should come right out and say that during the 4 years I have been on this forum I have never believed one f**king word from any of the habituationist ballyhooers on behalf of their brilliant successes. It is nothing more than one big self-conning effort that (try as hard as I might) I have never been able to internalize.

 

[AfroSnowman]

I'm sorry it is for you, but I would remind people it does not need to be for all. I live quite happily, even though I have very loud tinnitus. Not everyone 'suffers' tinnitus. Many of us just 'live' with it.

I've come to think it is less about the volume and more about the quality of it. When mine is just loud - hear over everything - it can be a shrug, something too bad, but whatever. My problem is that about 60% of the time it is rapidly changing second by second and more importantly painful. You know painful like fingernails on the backboard is painful. That is the part that, though I can force myself to relax and not wince, puts me into a state where I am just surviving.

 

[Wrfortiscue]

I've come to think it is less about the volume and more about the quality of it. When mine is just loud - hear over everything - it can be a shrug, something too bad, but whatever. My problem is that about 60% of the time it is rapidly changing second by second and more importantly painful. You know painful like fingernails on the backboard is painful. That is the part that, though I can force myself to relax and not wince, puts me into a state where I am just surviving.

Same. I keep thinking it can't get any more piercing. Wrong everytime.

 

[GeorgeLG]

I believe that the truth is a mix of all of the above. Some who have tinnitus have comorbidity with a condition of the mind such as OCD or depression or anxiety, this is stated frequently here by members. That said, this is not always the case. Some people who have never had any of these issues just went into the military or worked in a loud factory or was given a drug by a doctor. Some never had any identifiable trigger event.

If a mental condition coexists, does it make this worse or does resolution of that condition improve tinnitus, yes and no to all the above. My neighbor's tinnitus arrived during the stress of watching her husband die and her OCD makes it hard for her to stop obsessing about it so they can coexist and affect each other but not for everybody. I have OCD but it has gotten better, not cured.

People who have improved need to stop implying that mental illness is responsible for a lack of progress and people who have not benefitted from exploring the emotional component need to stop declaring that it's universally bullshit promoted by liars and scammers. The severity wars is also pointless because there is no way to actually compare. I have read of some people making an audio file to play for their spouse to get in the ballpark but what's the point? One man's torture is another woman's no big deal. That is searching for sympathy or validation which I understand but is also pointless. If the people around you or on this forum have no empathy for you, a mixtape will not generate it. If you want to see what cruel dismissal looks like, lose your wife and get terminal cancer as I have. People say way worse things to me in that regard than for tinnitus. Many have abandoned me completely and don't even stick around to say something hurtful. The journey is within, and the progress is made with our unique discoveries. I am at peace with my tinnitus and cancer. It bothers others way more than me, at least on cancer. Both sides of that polarized position are preventing improvement for others or maybe even themselves. Consider why you react so strongly, knowledge exists in that journey. Knowledge is power, not ignorance. I know I just quoted the movie Lucy but I love the quote.

This is not one monolithic condition and projecting our personal experience onto the other 8 billion people is illogical if not harmful. We should share our experiences and try to help each other find what may reduce suffering. I can't achieve a decent hand stand after 68 years, many of those years trying. That does not mean that a hand stand cannot be achieved. Some have claimed a cure that I have not achieved but their methods have helped me. Are they lying or scamming? I am sure a few are but not all, probably not even most. We all have a different path. Assuming that everyone will and should have our exact experience with this is not helpful. To say I had this experience I would like to share so that others may potentially benefit from this in success or in avoiding potential harm is useful.

Tinnitus and its related afflictions is not black and white and our individual path is not the same as all others', just some others'.

I asked my new cancer doctor Friday what my life expectancy is from my stage 4 and incurable cancer? She said I don't know, you are all different. We have some predictors but the range is wide. She told me that most of her patients die of something else, a comorbidity in the most pure sense. My previous doctor said that she will no longer predict life expectancy because too many were dying very near their given expiration date. When she keeps it to herself, she is now frequently surprised. The mind is powerful young skywalker, use your power for good.

George

 

[AfroSnowman]

Same. I keep thinking it can't get any more piercing. Wrong everytime.

Just two days ago the piercing piece subsided for a few hours - still super loud, but I was perfectly able to be pleasant, engaged, happy. It is that painful piece where I just need to survive, push through, consciously relax and not react, essentially disassociate from myself because the 'myself' has a pain that it can't escape or influence in any way.

 

[tpj]

I'm sorry it is for you, but I would remind people it does not need to be for all. I live quite happily, even though I have very loud tinnitus. Not everyone 'suffers' tinnitus. Many of us just 'live' with it.

You could have made that point without totally dismissing what other people might be going through. If you cannot understand that, there is nothing more I can say.

 

[Ryan Scott]

Just two days ago the piercing piece subsided for a few hours - still super loud, but I was perfectly able to be pleasant, engaged, happy. It is that painful piece where I just need to survive, push through, consciously relax and not react, essentially disassociate from myself because the 'myself' has a pain that it can't escape or influence in any way.

It's interesting to see other people's perspective. For me personally, it's the volume of the ringing. When mine is low, I can function just fine.

Tinnitus can be such a devastating and life destroying condition that has absolutely nothing to do with mental illness.

I agree I've never had any, zero problems before tinnitus. As I've said before, I was working out 5x a week, running and very active in general. I was never on any medications, I never had anxiety or any health problems. I always ate healthy probably because most of my family is in the medical profession so I realized the importance of it.

Once I got tinnitus, that all changed.