Why So Little Awareness of Tinnitus?

[Contrast]

We are living in a backwards part of human history with one of its key gimmicks being medical science is primitive.

 

[Tanni]

Eh, I think it would be more effective than you think. I don't smoke, because I could see myself getting cancer from it. Also, it's a money drain. If they approached hearing loss a similar way, I would have been more careful around it too.

It's a good analogy, and certainly less people are smoking since the government started educating people about the dangers of it. You've convinced me

 

[DaveN]

I don't know if it's just me, but I feel like a large portion of why more isn't done/known about tinnitus is because it's not looked at as something as debilitating or life altering. The general consensus among the public feels like it's viewed as an inconvenience more than anything.

 

[Juan]

The government already pays disability to soldiers with extreme tinnitus

That can probably be objectively proved. Let's say there were sent to Irak to search for the non-existent weapons of mass destruction and they got blasted by an explosion there. Pretty easy to get hearing problems after that.

However, there is a lot of gray space between a nearby explosion in combat that nearly killed a soldier and working at a very loud factory with earplugs on and still developing tinnitus and hyperacusis. And that's what needs to be addressed, the "factory" type of hearing issues. And no one talks about it because (i) it would cost money (pensions, disability etc), (ii) there are too many jobs that mean working around loud or very loud noise and (iii) it's hard to assess the severity of tinnitus or hyperacusis during a medical exam, since it is the patient who report on these, and there are not objective test that can measure these conditions without the collaboration of the patient, so the only way to ascertain the degree of severity is observing the limitations on the patient's life, the activities that cannot be done anymore, the impossibility to be around loud noise etc etc.

 

[WillBeNimble]

I don't know if it's just me, but I feel like a large portion of why more isn't done/known about tinnitus is because it's not looked at as something as debilitating or life altering. The general consensus among the public feels like it's viewed as an inconvenience more than anything.

Yeah, well, Hearing Loss can be debilitating. Tinnitus is a symptom of that. The problem is, we have a "treatment" for hearing loss in terms of hearing aids. Also, for the general public, it is just an inconvenience. It's what they get after a loud rock show, and then it goes away. Somewhere between 1 in 5 or 1 in 10 people have tinnitus, and many have the easier masked kind, and they don't worry about it after. Some get lucky with the tone they hear, and so it's not a big deal. Other's, it can wreck. We need effective PSA's or explanations of it to people by either those with bigger platforms or from doctors. Personally, I think it's criminal that we don't actually explain it more.

 

[ASilverLight]

I still stand by what I've said in other threads. I do not care that for the vast majority it's only a soft tone they usually only hear in silence. I really don't. While I'm happy for them, it makes all of us look like we're pathetic for not being able to deal with it because they don't realise it's much more severe for me. My friends with tinnitus thankfully all do recognise mine is much more severe and that it sucks.

But by treating this condition from the most mild cases rather than the more severe cases... it won't ever be a priority. And you don't often see that happen to other conditions... although many neurological conditions as a whole are treated as a bit of a joke.

 

[WillBeNimble]

I still stand by what I've said in other threads. I do not care that for the vast majority it's only a soft tone they usually only hear in silence. I really don't. While I'm happy for them, it makes all of us look like we're pathetic for not being able to deal with it because they don't realise it's much more severe for me. My friends with tinnitus thankfully all do recognise mine is much more severe and that it sucks.

But by treating this condition from the most mild cases rather than the more severe cases... it won't ever be a priority. And you don't often see that happen to other conditions... although many neurological conditions as a whole are treated as a bit of a joke.

Although I agree, it does make it difficult, even mild cases should be seen as hearing damage and a cause of concern. That means it can get worse if the issue isn't addressed.

 

[serendipity1996]

Although I agree, it does make it difficult, even mild cases should be seen as hearing damage and a cause of concern. That means it can get worse if the issue isn't addressed.

Or can be a precursor to other issues such as hyperacusis. I got mild tinnitus years before hyperacusis and if I had known then what I do now I could probably have prevented developing hyperacusis.

 

[ASilverLight]

Although I agree, it does make it difficult, even mild cases should be seen as hearing damage and a cause of concern. That means it can get worse if the issue isn't addressed.

You're definitely right - the issue is just that since many cases are mild people don't realise what the damage really is... but since that's the standard we are definitely not taken seriously. It's an issue for both ''groups''. I definitely see them as hearing damage personally, but the majority just doesn't or doesn't care... and that's where we hurt even more, you know?

Either way, it'll always be beyond me how little people care. Have always felt that way, even before I got tinnitus.

 

[WillBeNimble]

So, If I am understanding this correctly. You are suggesting institutionalizing hearing loss education by coordinating government, institutional, and private entities? I don't see it happening; too ideological. People can't even get it into their heads to wear a facemask to prevent the spread of COVID-19 in the US where daily data is presented to them via the media, government, and private entities coordinating.

In a lot of ways what you're describing is happening, since the 1990's; Music player / phone makes issue warnings. There are warnings for tools about hearing loss. The WHO claims that Hearing Loss is the #2 economic health threat, only behind global warning. YET, research has indicated that hearing loss and tinnitus are on the rise amongst a younger demographic and is expected to increase over the next 20 years. So, it doesn't seem to be enough just to take the pamphlet and questionnaire approach.

Plus, its impossible to prevent accidents/environmental factors where hearing loss unfortunately occurs; Airbags come to mind, or living near a railway or construction zone. Occupational / military situations.

Giving private practices new tools/techniques to gain repeat business is far a better fit for the current model. Potential for profit drives adoption in this industry.

Those warnings suck. They give no context, and just warn that "Hey, this could make your hearing worse in the future." That would be like if we just had the surgeon general warning on cigarette's and didn't have any other campaign associated with them. No end smoking campaigns, no TRUTH campaign, no health classes going over the impacts of smoking, no startling showing of smokers using a voice box. No news media bringing up how deadly smoking is, or characters in television being disgusted by smoking. If you remove those campaigns, I don't think that the public would have changed their minds anywhere near as much. BUT, because of all those things, we have only 14% of the population that smokes. And because I'm suspect of that data with regards to vaping, we went from 42% of adults smoking in 1965 to 23% in 2000%. In fact, this study agrees that it would have been far less effective. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1653696/?page=5

An effective awareness campaign spearheaded by a large body that actually had some teeth and influence could do a lot. Explaining the real world impact of hearing loss, on the economy, on those that didn't get a warning, the human cost could be quite effective. The problem is funding such an awareness campaign, and getting those that are key influences on the public, doctors, celebrities, teachers, on board to let it be known too. The funding problem comes out to because since Hearing Loss isn't seen as "Life Threatening" people don't do much about it. It's seen as a natural part of life, that hearing aids can help. Nevermind that until I actually hurt my hearing I couldn't tell you how much a hearing aid cost (Roughly 1-2K for a single one online, and probably more in store), or that only 1/3 of those that would benefit ever get hearing aids due to the cost. Hell, had you told me that growing up, I would have changed a lot of my ways already, tbh. In summary, it would work, it just requires someone powerful to actually lead the way.

As for accidents, you're right, there's nothing that could be done there. An airbag could ruin your hearing, as those are very loud. Living next to a railway or construction zone is loud, but I would argue that a more sound conscious society could adapt to that, if it even was an issue. I feel if it was a bigger effect on hearing then we'd have more issues with them at large. Occupational is an issue, and we should change the culture from being one where it's just something that happens to one where we actually do something about it, but that won't change without pressure. As for military, yeah, that happens. Then the military tries to help after the fact, but they do try and take precautions to start.

Though I agree, giving private practices a new way to gain business will drive awareness as well, even better than a multi-tiered campaign by health institutions and government probably. Sort of like the nicotine patches and gum of my smoking analogy. Once doctors and ENTs have something they can actually DO about it, and make a profit to boot, will really help the awareness, as it will be advertised, explaining the negative consequences of doing nothing about it. People would know that if they have a ringing or hearing loss, that there would be treatment with fx-322. Which could work as well. I agree with @Lucifer though, making our devices quiter would be a great place to start.

 

[serendipity1996]

I also think one of the core issues regarding lack of education about hearing loss is that so many people have this misconception that hearing loss is a relatively straightforward phenomenon and it just involves everything sounding quieter. Or that it can be easily 'fixed' with a hearing aid like it is with glasses. Not many people seem to be aware that it can induce distortions, hyperacusis, raging tinnitus etc.

 

[Lucifer]

I also think one of the core issues regarding lack of education about hearing loss is that so many people have this misconception that hearing loss is a relatively straightforward phenomenon and it just involves everything sounding quieter. Or that it can be easily 'fixed' with a hearing aid like it is with glasses. Not many people seem to be aware that it can induce distortions, hyperacusis, raging tinnitus etc.

This is the warning that we need. I hate how they just talk about loud noise causing hearing loss but don't mention you can get other symptoms such as hyperacusis and tinnitus.

I wish there was more awareness about hyperacusis and tinnitus. If I had this warning back then I may not have got hyperacusis and tinnitus.

 

[Orions Pain]

I also think one of the core issues regarding lack of education about hearing loss is that so many people have this misconception that hearing loss is a relatively straightforward phenomenon and it just involves everything sounding quieter. Or that it can be easily 'fixed' with a hearing aid like it is with glasses. Not many people seem to be aware that it can induce distortions, hyperacusis, raging tinnitus etc.

This!! I think most people are aware loud noises are dangerous and just believe that when they're 60 they won't be able to hear well and can just get a hearing aid.

The problem is most people aren't aware of what's actually dangerously loud. We assume "dangerous" is something like working a job that involves a drill or a heavy metal musician.

We don't give a second thought to bars, concerts, standing by a speaker at a wedding, street construction, train noise, etc. There aren't really any warnings about using headphones too long or too loud. No one informs you of decibel levels, or that duration of exposure matters.

How many of us probably wouldn't have been in the position that we're in now had we just been well informed about these issues. Sure there are people who would say f it and continue abusing their ears. But similar to cigarettes, there are those who would take the dangerous seriously.

As someone who love music and concerts, seeing a documentary about teens/people in their 20's with crippling hyperacusis and tinnitus would have scared the hell out of me 100%, and I probably wouldn't be part of that statistic now had I been well informed that both tinnitus & hyperacusis are very real and very possible.

 

[serendipity1996]

This!! I think most people are aware loud noises are dangerous and just believe that when they're 60 they won't be able to hear well and can just get a hearing aid.

The problem is most people aren't aware of what's actually dangerously loud. We assume "dangerous" is something like working a job that involves a drill or a heavy metal musician.

We don't give a second thought to bars, concerts, standing by a speaker at a wedding, street construction, train noise, etc. There aren't really any warnings about using headphones too long or too loud. No one informs you of decibel levels, or that duration of exposure matters.

How many of us probably wouldn't have been in the position that we're in now had we just been well informed about these issues. Sure there are people who would say f it and continue abusing their ears. But similar to cigarettes, there are those who would take the dangerous seriously.

As someone who love music and concerts, seeing a documentary about teens/people in their 20's with crippling hyperacusis and tinnitus would have scared the hell out of me 100%, and I probably wouldn't be part of that statistic now had I been well informed that both tinnitus & hyperacusis are very real and very possible.

Yup totally agree - people think hearing loss is a problem for me in 20 years down the line, not today or tomorrow or next week. So many people aren't aware that noise doesn't have to reach the threshold of pain (120dB in healthy ears) to cause damage - it starts at 85dB or maybe even lower. Prolonged listening can be harmful too.

 

[WillBeNimble]

Yup totally agree - people think hearing loss is a problem for me in 20 years down the line, not today or tomorrow or next week. So many people aren't aware that noise doesn't have to reach the threshold of pain (120dB in healthy ears) to cause damage - it starts at 85dB or maybe even lower. Prolonged listening can be harmful too.

Exactly. What's really annoying is seeing all the resources that they've made to try to raise awareness on the issue now. Like the CDC has a video on it that's just terrible, showing a guy just listening to loud music in his headphones and his hair cells being damaged. It lacks the human aspect of the anti smoking ads. We don't learn anything about him. Also, it misses out how loud everyday things are.

 

[serendipity1996]

Exactly. What's really annoying is seeing all the resources that they've made to try to raise awareness on the issue now. Like the CDC has a video on it that's just terrible, showing a guy just listening to loud music in his headphones and his hair cells being damaged. It lacks the human aspect of the anti smoking ads. We don't learn anything about him. Also, it misses out how loud everyday things are.

Yeah, there's no context to it. You can't escape noise, particularly in today's society thus hearing disorders can be profoundly life-altering. Navigating daily life becomes a minefield when you have tinnitus and hyperacusis and hearing loss can really lead to social isolation etc and cut you off from friends and hobbies. If these were highlighted then it makes it more 'real' and not just some abstract concern.

 

[WillBeNimble]

I mean, look at how bad these are.



Compared to this:

 

[WillBeNimble]

"For a long time".

It doesn't matter how long. It's damaging no matter how long. This warning is such crap, cause it can be inferred that if you're only listening to it for a bit, it's fine. They don't tell you how long it is though, or any context.

 

[WillBeNimble]

So, I would say the perfect PSA for Hearing Loss/Tinnitus/Hyperacusis, would be a video first explaining how with modern phones, at max volume it takes only 30 seconds of earbud use to cause permanent damage. Tell people how loud the phone should be at to not have to worry about damage, and suggest a volume limiter. Then going over the decibel levels of other common tasks, like concerts and mowing the lawn. That that damage can start off as a low buzz at first, that's not as big as a buzz from concerts, but that it's a warning to examine what you're doing and try and remove loud noises. That if one notices a buzzing, they should notify their doctor right away, as there IS something that can be done about it (Steroids if it's new.), also that you could talk and identify the source of the damage. Then go into the repercussions from not taking action by highlighting tinnitus, hyperacusis, and hearing loss, using examples from the community. In my search for awareness videos, I saw one from Seeker that was good, it just missed actually going over how loud everything is nowadays and driving the point home with hyperacusis.

We should also be appealing the government to pass legislation similar to what the who has been suggesting, with volume limiters. Every phone shipped should have a volume limiter to 50% of the max volume when someone first gets it, and then by going through and setting the volume limiter higher itself, it tells you how loud the phone actually reaches at each level decibel wise, on average. I know some transducers can change the decibels by 10, but I can't believe that we couldn't get at least an average. We are letting these manufactures self regulate, and they've done a piss poor job of it.

 

[Thuan]

There is a lack of education during our school days in regards to tinnitus and hearing damage. In the US (I'm not sure about the rest of the world), we get mandatory health classes during elementary and high school. They did not and they still do not (I have nieces in elementary and high school) educate about hearing damage from common sources like headphones, concerts, firecrackers, or other loud noise sources, and ear infections.

When I was growing up, the only awareness that I knew of about tinnitus was that Beethoven had a "ringing" in his ear. I had never heard of anything else about tinnitus before.

When I developed tinnitus, I did not even know it was called tinnitus until I searched up "ringing in the ear." I did not know it can be permanent. I did not know there was no cure. I certainly did NOT know it was so debilitating.

I really wish the school education systems spend at least one day in each health classes talking about tinnitus and its devastating effects, especially since our children spends so much time in the computer with headphones on or blasting music in their rooms, or even loud as hell music in the school stadium. I have one nephew and one niece with very minor unilateral tinnitus that doesn't bother them because they can only hear it in very "quiet" places. I heard from my niece all 4/6 of hear friends also have very minor tinnitus where they can hear it in a quiet rooms but she told me her friends were still very basé about protecting their hearing since their level of tinnitus was still quiet. They have no idea it can still get dramatically worse.

More and more people are getting tinnitus and I strongly believe it should be incorporated into our education system.

I did not really care about losing hearing before because I had thought "So what I hear less? I see people where hearing aids and they seem fine (on the outside)", but if I had known that tinnitus was so immeasurably life altering and suicidal, I would have protected my ears more (either from acoustic trauma or ear infections or ototoxic medications).

 

[WillBeNimble]

There is a lack of education during our school days in regards to tinnitus and hearing damage. In the US (I'm not sure about the rest of the world), we get mandatory health classes during elementary and high school. They did not and they still do not (I have nieces in elementary and high school) educate about hearing damage from common sources like headphones, concerts, firecrackers, or other loud noise sources, and ear infections.

When I was growing up, the only awareness that I knew of about tinnitus was that Beethoven had a "ringing" in his ear. I had never heard of anything else about tinnitus before.

When I developed tinnitus, I did not even know it was called tinnitus until I searched up "ringing in the ear." I did not know it can be permanent. I did not know there was no cure. I certainly did NOT know it was so debilitating.

I really wish the school education systems spend at least one day in each health classes talking about tinnitus and its devastating effects, especially since our children spends so much time in the computer with headphones on or blasting music in their rooms, or even loud as hell music in the school stadium. I have one nephew and one niece with very minor unilateral tinnitus that doesn't bother them because they can only hear it in very "quiet" places. I heard from my niece all 4/6 of hear friends also have very minor tinnitus where they can hear it in a quiet rooms but she told me her friends were still very basé about protecting their hearing since their level of tinnitus was still quiet. They have no idea it can still get dramatically worse.

More and more people are getting tinnitus and I strongly believe it should be incorporated into our education system.

I did not really care about losing hearing before because I had thought "So what I hear less? I see people where hearing aids and they seem fine (on the outside)", but if I had known that tinnitus was so immeasurably life altering and suicidal, I would have protected my ears more (either from acoustic trauma or ear infections or ototoxic medications).

Absolutely they should be educating about it in health classes. I know that in my state, they expanded the number of times they test hearing on students from 1 to three times, but actually going over it in health class would help. That and a concentrated effort by ads to get those out of school updated on the health knowledge. Either ads or doctors.

I also feel that that's needed because school systems are very slow to change, and the PTA's and legislatures involved in it are slow as well. I don't expect to see a bill regulating noise until 2040, tbh.

I know I'm going to talk to my doctor at my next appointment and see if I can't get them to screen for it more. Then I want to see if I can convince the local hospital how important hearing is and to bring it up as well. At least through letters during these Covid times.

 

[Kriszti]

I know that in my state, they expanded the number of times they test hearing on students from 1 to three times,

That's amazing. What kind of test is performed?

In my country, we have some health check-ups in school, but it doesn't expand beyond measuring or height, weight, a look at our teeth, and eye test. I have never ever had a hearing test during my 12 years in elementary and secondary education. Hearing care is in the dark ages, absolutely neglected.

 

[Christiaan]

I found this article from 2015 about a fellow Dutchman named Ricardo, who lived/lives with an extreme case of tinnitus. He was not given a disability benefit because many people believe you can still work with just a sound in your head. He even threatened with euthanasia if the medical world does not take tinnitus seriously. He was on the news to tell this story. It gave him the motivation that this raised some awareness and he decided to continue with his life.

Link: https://www.hartvannederland.nl/top...-blijven-leven-dankzij-extra-aandacht-artsen/

I have to say, even after five years, the medical world here in this country doesn't take tinnitus seriously. Not a single step of progress. My ENT doesn't even know what hyperacusis means or even knows the use of an extended audiogram to rule out hearing damage/loss. Even my family thinks it's all in my head and that I should continue to do the things I used to do, like reading books, working, teaching. All the things that I really can't do 100% anymore.

 

[ASilverLight]

@Christiaan the related news articles make me sad. Young kids with hearing damage and tinnitus, one kid who killed himself, and one article mentioning that there's therapy to get used to it

 

[Christiaan]

@Christiaan the related news articles make me sad. Young kids with hearing damage and tinnitus, one kid who killed himself, and one article mentioning that there's therapy to get used to it

I'm sorry. It's very disconcerting to read those stories, let alone live in the knowledge that it always can be worse.

 

[Adaś]

I don't know if it's just me, but I feel like a large portion of why more isn't done/known about tinnitus is because it's not looked at as something as debilitating or life altering. The general consensus among the public feels like it's viewed as an inconvenience more than anything.

I cannot agree more. Honestly nobody really cares if your life becomes miserable, all what is important is that you cannot die of tinnitus, unless ending life yourself, which of course you'd be blamed for, not tinnitus. Nobody gives a damn about your life quality, all what is important is that you can still continue to work and pay taxes.

There so many things that make this condition so unfortunate:
1. People don't die directly from tinnitus, so there's is no directly measurable loss when someone gets tinnitus. It is just some immeasurable sound in your head that makes you mad.

2. The prevalence of tinnitus is large enough to affect many including us, but unfortunately not large enough to create enough rage and/or fear that could drive the society to find efficiently a solution to it. I will repeat myself - why do we have only 31,000 members on this forum? The risk of having permanent tinnitus after rock concert is said to be high, but how high? Nobody knows. If each single concert or sport event would be known to leave 1% of audience with permanent tinnitus then this would be enough to do something about the problem and we would be flooded with 50-100 new members each day, but we are not. Yet you can see lot of people doing loud things with absolutely no hearing protection and all they get most is a temporary tinnitus that goes away. Most people think it is temporary condition. Paradoxically if the prevalence was higher we would likely have a cure by now.

3. It is NOT (called) a disease, but a symptom, which IMHO downplays how debilitating and incurable it is. This also gives false impression, that it is a symptom of something you can treat or is temporary. Or even blurs the whole problem, like... "oh tinnitus it can be a symptom of so many things....". Why diabetes can be called disease when it is a symptom of pancreas malfunction? We should demand a right to call tinnitus disease too! Maybe then it will be treated more seriously.

4. It is said to be strictly related to/connected with hearing loss, and hearing loss have solution... hearing aids! This gives false impression that there's solution to hearing loss and tinnitus as well.

To create some compassion we would need to have a tinnitus day at work or at school, playing not loud (so it is safe), just audible, high pitched beep or hissing for the whole day at work and/or at school, to make people understand what it is. It bet the the most of people would be begging to turn it off after few minutes. But to fully understand they would need to have it for at least couple of hours to understand the burden and exhaustion it creates in one's head.

This is may sound like a cruel way to explain it, but I think it would be best way to make feel more compassionate and what is most important scared, because in the end it is a FEAR that unfortunately drives society to do something more than usual.

I only wish I had some other condition with higher prevalence and something that is directly lethal when untreated.

 

[Ken219]

Just popped in to see how people are doing? Appears July 17, 2020 was a day to vent.
If you are not from Europe, have you seen the Europe cigarette packaging? The labels are a horror show but yet people keep smoking. The interesting thing about the inner ear is it controls hearing and balance. All the governments are trying to develop a weapon to destroy an armies' inner ear. Think on that.

 

[Ken219]

However, there is a lot of gray space between a nearby explosion in combat that nearly killed a soldier and working at a very loud factory with earplugs on and still developing tinnitus and hyperacusis. And that's what needs to be addressed, the "factory" type of hearing issues.

There is a little known human factor. Earplugs are rated NRR (Noise Reduction Rate). NRR is the maximum dB reduction if you are a perfect human. Example noise level 110 NRR 32 simple math 110 - 32 = 78 dB. Sounds safe enough. But you are not a perfect human. The rule of thumb is, if you are wearing a product with an NRR of 32 it would deduct 12.5 decibels ((32-7)/2=10). Example noise level 110 NRR 32 the true math is 110 - 12.5 = 97.5 dB. Dangerous level. Your estimated NRR may vary! Sad but true.

Funny thing you brought up combat and the military. One would hope the military has the best equipment and is informed of the dangers of loud weaponry! What happens when a government contractor intentionally manufacturers a defective product? Virtually nothing.

Read military history: If it wasn't for a whistleblower 3M would still be selling the military defective earplugs! From 2003 and 2015 and maybe longer!
3M A contracting company agreed to pay $9.1 million (pennies, not only is tinnitus deeply disruptive; it's expensive. The Department of Defense spends about $2 billion each year on tinnitus compensation to veterans.) to resolve allegations that it knowingly sold the U.S. military defective earplugs.

The Minnesota-based 3M Company allegedly sold its dual-ended Combat Arms Earplugs, Version 2, to the Defense Logistics Agency without disclosing defects that decreased the actual effectiveness of the hearing protection the device offered.

3M should be contributing 100 million a year to tinnitus research for their intentional harm!

 

[WillBeNimble]

That's amazing. What kind of test is performed?

In my country, we have some health check-ups in school, but it doesn't expand beyond measuring or height, weight, a look at our teeth, and eye test. I have never ever had a hearing test during my 12 years in elementary and secondary education. Hearing care is in the dark ages, absolutely neglected.

Standard Audiogram test. Granted, doing it three times might stress how important hearing is, but by not doing a full sweep, they're losing valuable information.

 

[WillBeNimble]

I cannot agree more. Honestly nobody really cares if your life becomes miserable, all what is important is that you cannot die of tinnitus, unless ending life yourself, which of course you'd be blamed for, not tinnitus. Nobody gives a damn about your life quality, all what is important is that you can still continue to work and pay taxes.

There so many things that make this condition so unfortunate:
1. People don't die directly from tinnitus, so there's is no directly measurable loss when someone gets tinnitus. It is just some immeasurable sound in your head that makes you mad.

2. The prevalence of tinnitus is large enough to affect many including us, but unfortunately not large enough to create enough rage and/or fear that could drive the society to find efficiently a solution to it. I will repeat myself - why do we have only 31,000 members on this forum? The risk of having permanent tinnitus after rock concert is said to be high, but how high? Nobody knows. If each single concert or sport event would be known to leave 1% of audience with permanent tinnitus then this would be enough to do something about the problem and we would be flooded with 50-100 new members each day, but we are not. Yet you can see lot of people doing loud things with absolutely no hearing protection and all they get most is a temporary tinnitus that goes away. Most people think it is temporary condition. Paradoxically if the prevalence was higher we would likely have a cure by now.

3. It is NOT (called) a disease, but a symptom, which IMHO downplays how debilitating and incurable it is. This also gives false impression, that it is a symptom of something you can treat or is temporary. Or even blurs the whole problem, like... "oh tinnitus it can be a symptom of so many things....". Why diabetes can be called disease when it is a symptom of pancreas malfunction? We should demand a right to call tinnitus disease too! Maybe then it will be treated more seriously.

4. It is said to be strictly related to/connected with hearing loss, and hearing loss have solution... hearing aids! This gives false impression that there's solution to hearing loss and tinnitus as well.

To create some compassion we would need to have a tinnitus day at work or at school, playing not loud (so it is safe), just audible, high pitched beep or hissing for the whole day at work and/or at school, to make people understand what it is. It bet the the most of people would be begging to turn it off after few minutes. But to fully understand they would need to have it for at least couple of hours to understand the burden and exhaustion it creates in one's head.

This is may sound like a cruel way to explain it, but I think it would be best way to make feel more compassionate and what is most important scared, because in the end it is a FEAR that unfortunately drives society to do something more than usual.

I only wish I had some other condition with higher prevalence and something that is directly lethal when untreated.

I agree with everything you've said here. It's why I've been talking about PSA's similar to smoking PSA's. Fear of being effected is what will drive caution. I do hate that it's seen as just temporary, as it gives doctors and patients the wrong impressions. I think a tinnitus week, with YouTuber and the CDC working together to bring awareness to the issue by sponsoring bigger tubers to talk about tinnitus, and the research that's going on, while also going over the dangers and way to prevent damage would help. It just requires the CDC to fund it. It amazes me how much they attack smoking, which generally effects people later in their retired life so strongly, but hearing damage can effect anyone of any age, and has more people effected, and they just let it go.