Why So Little Awareness of Tinnitus?

[Candy]

Governments, health authorities have no interest in spreading an awareness message... Tinnitus is not a burden on services, as opposed to smoking, diabetics, alcohol, heart disease... Because no money whatsoever is spent on it (given lack of treatments).

Do we need to become more burdensome, claim disability allowance and so on???

 

[GregCA]

Governments, health authorities have no interest in spreading an awareness message... Tinnitus is not a burden on services, as opposed to smoking, diabetics, alcohol, heart disease... Because no money whatsoever is spent on it (given lack of treatments).

You're not accounting for the billions of dollars spent by the VA alone?

 

[The Red Viper]

I hate to play identity politics here, but the only reason you and people like us are clamoring for awareness is because we have the condition.

I would wager that even us on Tinnitus Talk don't take the slightest amount of time thinking about other diseases not as well known, such as chronic fatigue syndrome, simply because we don't suffer with them.

 

[Candy]

We suffer but so do teens - thinking about the younger generation and lack of awareness worries me. ME, CFS are all extremely debilitating and have lots of committed bloggers raising awareness, with their inspiring stories.

Tinnitus to my surprise has none. Most disease advocates are sufferers, related to sufferers or work alongside sufferers. The head of phines4u has set up a charity for Lyme Disease suffers after he and his family contracted the disease.

Of course as you say there is personal interest here, for my kids, me as a mother and my fellow sufferers.

 

[valeri]

I hate to play identity politics here, but the only reason you and people like us are clamoring for awareness is because we have the condition.

I would wager that even us on Tinnitus Talk don't take the slightest amount of time thinking about other diseases not as well known, such as chronic fatigue syndrome, simply because we don't suffer with them.

I would have to disagree here!

Many don't have cancer, MS or Parkinson's either yet they know what those conditions are, they support charities and participate in events organised by those foundations.

On the other hand it's very humane that people would want to do something about condition they suffer from.

Tinnitus community is completely opposite to the rest, we like to complain, sit on our ass and wish for things to happen.

There is no force or willingness to change anything.

Another thing is that general public hardly even know what tinnitus is despite being wide spread.
If the ration is 1 in 10 then that's a hell of a people who have it.

The trouble is majority of tinnitus cases can be prevented (noise exposure) if there was more awareness happening out there.

 

[Vaba]

Put simply, the lack of awareness is because:

A: The vast majority of people never develop tinnitus despite their choice of lifestyle.
B: The people who manage to develop tinnitus often don't care about it.

A problem arises when someone who is very aware of themselves ("anxious") and highly functional develops tinnitus. If you absolutely 100% require silence and perfect hearing to function, tinnitus will destroy you.

If you don't give a shit that someone is screaming in your ears, you'll be A-OK.

This is why people think that habituation is the best option. The only way to not let it destroy you is to accept the pain.

 

[Cityjohn]

Who would you want to make aware of our problem and why?

 

[GregCA]

I hate to play identity politics here, but the only reason you and people like us are clamoring for awareness is because we have the condition.

I wouldn't put it in these exact words. I understand the sentiment, but I think a more accurate way of saying this is that we are clamoring for awareness because we now know about this condition (since we have it). Had we known about the condition before having it, I am sure a fraction of us would have tried to raise awareness, much like you raise awareness about any other condition on the planet, even if you don't suffer from it. If people at large were aware of how horrible this is, there would be a fraction of the population that would mobilize to help (starting with family members of sufferers, extended to social networks, health activists, etc...)

The issue about taking action is a bit different. People who have debilitating ailments aren't the ones taking action generally, because by definition, they are debilitated. The people debilitated by a cancer aren't the one "doing", because they can't. They have advocates who are in much better health do it for them.

The catch 22 is that in order to be super motivated to do something about tinnitus, you have to have a debilitating version of tinnitus, and that prevents you from executing with energy. Since tinnitus is "invisible", getting others to be your advocates is quite hard.

Yes, there are people that do like to complain and won't execute, whether sick or healthy, but painting tinnitus sufferers this way glosses over the very challenges of this condition.

 

[Yuuls]

Angry about the lack of awareness about hearing protection, and ear plugs at concerts.

Angry that others received a warning about it and were able to catch their tinnitus before it got worse.

I've probably been to at least 1 concert a year since I was 17/18. I am 26 now. None of my friends ever wore ear plugs. They all have older siblings who also don't wear ear plugs to this day. I've never seen a single pamphlet, tweet, online notice or anything on the internet/in person regarding wearing earring plugs.

There was ONE instance in my life where I was at a music festival back in 2017 and in my *post several beers* state remember seeing a guy sporting bright pink plugs but at the time I assumed maybe he had some sort of disorder or something (ironic now).

I have a few friends/coworkers who have very very mild tinnitus after asking around, and they continue to go to loud places despite OWNING ear plugs and not wearing them, and being well aware of what tinnitus is.

I had never even heard of the word before getting it and doing research myself. So today I am still sad, but very angry. Angry that I didn't have a chance to protect myself due to a lack of awareness.

 

[ajc]

Angry about the lack of awareness about hearing protection, and ear plugs at concerts.

Angry that others received a warning about it and were able to catch their tinnitus before it got worse.

Would you have taken such a warning seriously? Be honest to yourself. What should the warning have said?

 

[Shaz1]

I mean, I started protecting my hearing going to concerts maybe 5 years ago, well before I got chronic tinnitus.

But I didn't know that much about hearing damage when I first started going to concerts and stuff when I was 20. I didn't know that much about headphone use, except that too loud was bad. I didn't know musicians earplugs existed, and could be purchased as cheaply as $15.

Once I learned about it, and heard about my friend who got mild tinnitus from going to too many dubstep shows back in the day, then I started being more serious about protecting my ears (especially after a few incidents of ringing after shows and the pain of that).

If I knew when I was younger, I totally would have protected myself more, especially as someone who was going to 20-40 concerts a year. I wouldn't have worn protection all the time or been super paranoid, but I definitely went to shows or bars that I felt were uncomfortably loud and would have gladly taken protection if I knew things like musicians plugs existed. It wouldn't have eliminated the possibility of hearing damage, but the likelihood would have gone way down if I protected myself at the noisiest moments (or even all the years of riding the subway / airplanes).

I see a lot more people at shows wearing earplugs than I used to.

I mean, no one wore helmets when skiing back in the 90s. Now everyone does. It's not like skiing suddenly got more dangerous, but awareness improved and the culture changed, so that it became the norm to protect yourself. It used to be uncool to wear helmets, now it's uncool not to wear helmets. Same thing can easily happen with something like protecting your hearing.

Of course, there are other factors in tinnitus (e.g. medication, ear infections, etc) but protecting your hearing is an easy win that I think would be easy to make people aware of, especially people who are passionate about music and going to concerts.

 

[Yuuls]

Would you have taken such a warning seriously? Be honest to yourself. What should the warning have said?

If I was one of those people who got it mildly for a few hours/days after concerts/clubs... hell yeah my hypochondriac ass would have ordered ear plugs right away

Just talked to a friend about my issue and she asked me if it's that "mild ringing you get after concerts" UGH. Why do others get a warning first. It's not fair.

 

[WillBeNimble]

I agree, I find the lack of awareness disturbing. The lack of awareness eeks it's way into everything else too, from app design, electronic device design to health care. No one gives a shit, and it's so frustrating because it's so preventable for the majority of the population. What annoys me is how much other stuff is brought up and fretted over all the time, but is as much of the population effected or less than tinnitus. Breast Cancer and HIV come to mind.

Apparently about 1 in 4 U.S. adults who report excellent to good hearing already have hearing damage. I never heard that. I never had it explained to me as an adult just how precious hearing is, or as a kid for that matter. All it would have taken was a 15 minute conversation with my doctor on some routine trip, explaining how dangerous ear pods are, how to take care of my hearing. But no, we don't hear that. We hear ringing from now on, reminding us what we've lost.

If Shatner wanted to help people so fucking much after his tinittus, he should have campaigned to have hearing loss be taken more seriously, not sent Jastrabauff a ton of fucking money.

 

[WillBeNimble]

Hearing loss is the third most common chronic health condition in the US. Almost twice as many people report hearing loss as report diabetes or cancer. YET WE DON'T LET ANYONE KNOW ABOUT IT.

Maybe if we, I don't know, actually talked to people about it, we wouldn't have this problem? Maybe like a review every few years or so. Maybe a question on a stupid questionnaire, "Do you deal with loud sounds at work? Do you ever have the volume on your phone above 80%, or have program that does? Have you had a ringing in your ear in the last year?" But no, we can't do that. That would be too helpful.

 

[Lucifer]

Hearing loss is the third most common chronic health condition in the US. Almost twice as many people report hearing loss as report diabetes or cancer. YET WE DON'T LET ANYONE KNOW ABOUT IT.

Maybe if we, I don't know, actually talked to people about it, we wouldn't have this problem? Maybe like a review every few years or so. Maybe a question on a stupid questionnaire, "Do you deal with loud sounds at work? Do you ever have the volume on your phone above 80%, or have program that does? Have you had a ringing in your ear in the last year?" But no, we can't do that. That would be too helpful.

If there were warnings about loud sound causing tinnitus and hyperacusis which may end up being permanent many of us would not have this today.

I hope FX-322 ends up being successful for pain hyperacusis and tinnitus so I may be able to resume my life. My 20s have barely started and I got this shitty condition.

I was supposed to be working after I finish University but everything went down the drain. Once this is over I have no clue what I'm going to do with my life. May just do my own thing for a while and see where that goes and if I don't end up successful then I'll find a 9-5 job.

 

[Jazzer]

If Public Information films had been regularly broadcast during our youth our lives would have been spared.

Public information films (PIFs) are a series of government-commissioned short films, shown during television advertising breaks in the United Kingdom. The US equivalent is the public service announcement (PSA). Public information films were common place in the 1950s till the 2000s however became obsolete with the closure of the COI (Central Office Of Information).

This neglect was / is criminal.

The message is still not out there.

 

[ajc]

If Public Information films had been regularly broadcast during our youth our lives would have been spared.

Some lives may have been spared. Tinnitus is caused by a lot of things, some of which are unavoidable, accidents, ototoxicity (cancer treatments, life saving antibiotics...) etc.

Also it doesn't matter how many public information films you put out there, a great deal of people think it won't happen to them.

 

[ASilverLight]

Just saying... even being aware of the dangers can give you tinnitus. You can protect all you want but one little accident, or too many things going wrong at once, and you will still be in hell.

Maybe for many it could be prevented, but we need to make people aware that other things cause this shit too (perhaps alongside minimal hearing loss). We need proper tinnitus education.

I'm grateful that one of my favourite musicians spoke about his tinnitus and that my mother warned me. I probably did avoid a lot more damage. But sometimes one small incident is all it takes, and man, that sucks.

 

[Jazzer]

Some lives may have been spared. Tinnitus is caused by a lot of things, some of which are unavoidable, accidents, ototoxicity (cancer treatments, life saving antibiotics...) etc.

Also it doesn't matter how many public information films you put out there, a great deal of people think it won't happen to them.

As I understand it, over 90% of tinnitus cases are down to excessive noise exposure.
But if public information films would make no difference then we might as well not bother then eh??
(I totally disagree of course.)

 

[Lucifer]

Loud noise exposure that causes hyperacusis and tinnitus needs to have a similar awareness such as making sure you are wearing sunblock outside to prevent skin cancer.

If they use words such as "loud noise exposure can cause you ringing in the ears (tinnitus) and make sounds cause you pain or make sounds feel louder (hyperacusis). If you do not avoid or protect your ears with earmuffs and earplugs it will make tinnitus and hyperacusis permanent and if you continue to not protect your ears you will end up becoming worse."

If they use these words to warn people then people will end up taking tinnitus and hyperacusis seriously but everyone assumes loud noise damage causes hearing loss which is not as bad as getting tinnitus and hyperacusis. Therefore it does not make tinnitus and hyperacusis a serious condition to people.

 

[ASilverLight]

As I understand it, over 90% of tinnitus cases are down to excessive noise exposure.
But if public information films would make no difference then we might as well not bother then eh??
(I totally disagree of course.)

I do agree most of it is due to noise, but this forum also has plenty of people who got it after an illnes, medication, a head injury... which is what I'm trying to say.

Yes I do believe we need to raise awareness for NI tinnitus and the dangers of loud noise in general. It'll save a lot of people pain.

But when talking about tinnitus in general we need to raise awareness of other causes too. I thought it was ONLY caused by noise/hearing loss, boy was I wrong. If I had known whiplash and neck injuries etc could cause tinnitus I would have been much more careful at my job.

There's just such a general lack of understanding and awareness of this disorder. I seem to be a real exception knowing what damage noise can do - yet I'm still here, which I never thought would happen.

But people hardly care. It's just a little ringing, after all. That's why I have constant headaches and never feel rested at all anymore, right?

My worry is, even if we raise more awareness, it won't be taken seriously exactly because of the way it's viewed. Just a little ringing, nothing harmful, nothing to worry about, something everyone can get used to and something you won't notice if you just don't care about it.

Right.

 

[Jazzer]

Public information films worked brilliantly in raising awareness of:

- Smoking related lung cancer
- Breast checks
- Prostate checks
- Cervical cancer smears
- Testicular checks
- etc..........

 

[Tanni]

Public information films worked brilliantly in raising awareness of:

- Smoking related lung cancer
- Breast checks
- Prostate checks
- Cervical cancer smears
- Testicular checks
- etc..........

Totally agree -- make more people aware of the dangers of tinnitus. It wouldn't necessarily work that well on an individual level -- it's difficult for people to believe tinnitus will happen to them, or to understand how bad it is. That's just human nature. Also, music is so important socially and inspires so much passion, that it's hard to stop people from abusing it.

But what it might do is cause venues, tech companies, musicians etc to take responsibility for noise levels, which is the next best thing. It would also bring it into the public consciousness thereby spurring on a successful treatment. If everyone is afraid of getting it but doesn't want to give up their music, you're going to see increased funding for a cure.

 

[WillBeNimble]

Yes I do believe we need to raise awareness for NI tinnitus and the dangers of loud noise in general. It'll save a lot of people pain.

Summary:
I worry it won't be taken seriously and will leave out other factors, though.

I get that. I just think with a healthcare system that realizes hearing loss is a thing, and takes more active steps for it, we'd be warned about the oxotoxicity of drugs too. Like, the gp warning you that you're aspirin can cause hearing damage if you use too much, or that Wellbutrin has a 3% of causing tinnitus from hair cell death. And that doesn't happen till they're made aware of it.

 

[WillBeNimble]

Totally agree -- make more people aware of the dangers of tinnitus. It wouldn't necessarily work that well on an individual level -- it's difficult for people to believe tinnitus will happen to them, or to understand how bad it is. That's just human nature. Also, music is so important socially and inspires so much passion, that it's hard to stop people from abusing it.

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.

 

[Juan]

I agree, I find the lack of awareness disturbing. The lack of awareness eeks it's way into everything else too, from app design, electronic device design to health care. No one gives a shit, and it's so frustrating because it's so preventable for the majority of the population. What annoys me is how much other stuff is brought up and fretted over all the time, but is as much of the population effected or less than tinnitus. Breast Cancer and HIV come to mind.

Apparently about 1 in 4 U.S. adults who report excellent to good hearing already have hearing damage. I never heard that. I never had it explained to me as an adult just how precious hearing is, or as a kid for that matter. All it would have taken was a 15 minute conversation with my doctor on some routine trip, explaining how dangerous ear pods are, how to take care of my hearing. But no, we don't hear that. We hear ringing from now on, reminding us what we've lost.

If Shatner wanted to help people so fucking much after his tinittus, he should have campaigned to have hearing loss be taken more seriously, not sent Jastrabauff a ton of fucking money.

There is lack of publicity or media attention on hearing problems like tinnitus or hyperacusis because gathering attention to these issues is not beneficial for the economy.

Basically, governments, companies, entrepreneurs, do not want to talk publicly about health issues that can derive from going to clubs, discos, concerts, loud theaters etc, as people think these are normal leisure activities, and they generate a lot of money.

Just think that some musicians have spoken up about their hearing problems, but these are only a very small minority, and the music and recording industry does not want to gather attention to this.

On top of that is the question of safety regulations at work, pensions for disability etc etc. In many industries noise cannot be avoided and they use mitigating measures and hearing protection (earmuffs, earplugs etc) that may not even be enough to prevent damage. And of course no one want to talk about this, as it could provide grounds for claiming pensions for disability etc.

 

[WillBeNimble]

There is lack of publicity or media attention on hearing problems like tinnitus or hyperacusis because gathering attention to these issues is not beneficial for the economy.

I mean, I get the concert industry being against it, but the government? Further, although it might depress those industries, others would spring up. And nothing says you have to stop going to concerts, just wear protection, or find a different way to deliver the acoustics instead of from loud speakers only in the front, maybe disperse it with enough area to allow the dbs to be safe?

 

[Juan]

I mean, I get the concert industry being against it, but the government? Further, although it might depress those industries, others would spring up. And nothing says you have to stop going to concerts, just wear protection, or find a different way to deliver the acoustics instead of from loud speakers only in the front, maybe disperse it with enough area to allow the dbs to be safe?

The government does not want to open a debate about whether workers damaged by noise in working environments (even wearing hearing protection) are entitled to a pension, or compensation. They want to leave that area unclear, they don't want to address the topic in a transparent manner.

 

[WillBeNimble]

The government does not want to open a debate about whether workers damaged by noise in working environments (even wearing hearing protection) are entitled to a pension, or compensation. They want to leave that area unclear, they don't want to address the topic in a transparent manner.

The government already pays disability to soldiers with extreme tinnitus, so if they wanted to not make it a debate they wouldn't be doing that. Also, half of hearing damage isn't work related, so just saying that it's all for saving money doesn't seem to make sense. Further, if they really didn't want to have the conversation, why have the CDC gather the data for it? I don't think it's as malicious as you think, I think it's much more just incompetency.
The ENT field rife find those with damage and convince them to get hearing aids out of pocket, so they have no financial incentive. ENT's aren't taught to keep up on the research of tinnitus, because....well, I dunno, I sorta feel like since they have no way to treat it they just don't care.
I sort of feel like what holds it back is that it's seen as a natural part of aging, and so we don't have people actually mention it or champion awareness of it.

 

[Contrast]

@WillBeNimble I've never seen you before, but I'd like to say thank you for spreading the red pills. It does feel like we are standing up against a propaganda ministry.