If Tens of Millions of People Have Tinnitus, Why Does This Forum Only Have 10,000 Members?

[sanj100]

Hi.

This is something that I've been curious about.

Everywhere I read, it says tinnitus affects tens of millions of people just in the US.

So if it is such a prevalent thing affecting so many how come this forum, the most prominent tinnitus forum only has 10,000 ish members?

Is it because most of the people that have tinnitus are older and thus use the internet less? Or some other reason.

 

[Fangen]

Explanation to why:

1. People are not bothered like we are with their tinnitus
2. People don't want to be reminded of their tinnitus by coming here
3. People are not interested in discussing their tinnitus online / in a forum
4. People are not aware that this forum exists
5. People don't want to sign up and only read the posts
6. People don't have access to the internet or have limited access

 

[Mentos]

That lie that millions of Americans have tinnitus is a lie that surely arose from the fact that what most consoles the tinnitus sufferers is not feeling alone, so that the experts have inflated the numbers throughout years to get to that exaggeration.

More than 50 million Americans voted for Trump, and more or less that number are the followers he has between Twitter, Facebook and Instagram together.

The Facebook page of most important tinnitus forum that is this (Tinnitus Talk), only has 2372 members, and the tinnitus Facebook groups of the different USA states has 1 member on average and in Tinnitus Talk forum there are only 75 Americans (USA & Canada).

Even the tinnitus Facebook group in my country only has 2 members.

That false tale of 50 million USA tinnitus sufferers does not fit anywhere, not even exaggerating the actual cyphers.

https://www.tinnitustalk.com/threads/where-are-you-from.16512/
https://www.tinnitustalk.com/threads/poll-where-does-everyone-live.20044/

What makes you be so sure that the number is exaggerated?

50 milions would be around 15% of population I guess so it fits the worldwide statistics.

In Poland at tinnitus clinic they say it affects 15-20% of population, but only 20% of sufferers perceive it as a real problem and seek for medical help.

All the others once told there's noting that can be done move on with their lives.

It was hard to believe in it for me at first, but when I started to investigate it came out that my wife has it, my mum, mu father in law, my sisters mother in law, wife of my colleagues from work, my aunt, my sisters (very mild though), my brother in law (mild), my mother in law (mild), father of my colleague.

Certainly intensity of tinnitus differs between people but looking only around me I started to believe it may really be pretty common.

Why should the statistics lie in your opinion? I don't think doctors lie to cancer patients saying "come on, it's so common, don't dwell on it".

Fact of life is that some people deal with tinnitus pretty well, while others find it difficult to function with it.

Even looking at Tinnitus Talk forum itself you'll find greatly positive people with severe tinnitus, and severely depressed people with mild tinnitus.

Why is it like that? Hard to answer it. I have mild tinnitus and even though I function much better than directly after onset it's still difficult for me and nags me daily.

 

[Greg Sacramento]

Agree. It is said that only one million to one and half million have severe tinnitus where it becomes a burden. Many others whatever that total number is, often don't seek medical attention. ERs and hospitals do have reporting systems. Doctors do report to their practicing hospital association.

My GP (doctor) has a busy practice. I'm his only patient with tinnitus.

 

[mjs 89]

Simple. If the age statistics are correct, the majority of cases belong to people old enough to have already figured out how to cope. Or they've simply accepted it. My parents are two of them, and I'm 50. I never knew they even suffered until yesterday, and when I asked why I never knew, they said, "Bigger fish to fry."

I have to admit, I am bothered least when I focus on those other fish.

 

[Dmitriy]

50M sounds excessive. I agree with bulleted list above as to low membership numbers for this site. I also want to believe that many folks get better and never came back to forum. It's a bitter sweet thing because while it's good for them it would be nice to hear their stories and have the help people who are currently suffering.

 

[Luman]

I have wondered about this as well, and why we aren't hearing more about tinnitus with such a high rate of this disorder.

I believe that the vast majority of people with T have naturally habituated to it, and that is the main reason why they are not on a forum. Those of us who are new, or have a very bad case, or for some other reason, join groups such as this.

 

[UpDownAround]

Agree. It is said that only one million to one and half million have severe tinnitus where it becomes a burden. Many others whatever that total number is, often don't seek medical attention. ERs and hospitals do have reporting systems. Doctors do report to their practicing hospital association.

My GP (doctor) has a busy practice. I'm his only patient with tinnitus.

Maybe you are the only one who told him you have tinnitus. It is inconsequential to a lot of people.

 

[Jkph75]

Most people don't have it bad enough to need to talk about it. Most people hear a little noise in a quiet room. Most people don't hear it most of the time.

I don't know about you, but I don't have the kind of tinnitus that most people have. If I did, I wouldn't be here either.

 

[gorirasan]

Most health forums are like that and I even think that TinnitusTalk is pretty populated. Migraine forums, for example, are usually pretty empty and even on Facebook there isn't so many people in groups, even though migraine is a pretty common thing.

 

[Paulmanlike]

@Equalizer you are mistaken, millions of people do have tinnitus. If you go about your life and talk about it, you will find a number of people who have it but you just didn't know about it. That's what I've found.

 

[Greg Sacramento]

@UpDownAround I agree. Mostly only those with moderate or severe tinnitus would tell their doctor that they have tinnitus. Many who fill out medical forms at a doctor's office do check off that they have tinnitus, but their medical visit or checkup isn't related to them having tinnitus. Those forms are where the numbers are recorded and send to national medical databases.

Many tinnitus sites state that 10% with tinnitus have bothering tinnitus that interferes with daily activities and leading a somewhat normal life. Sites also state that those with severe tinnitus number 1 to 1.5 million. The question on this site's homepage about have you ever called in sick due to your tinnitus shows that only about half have. That's interesting.

Sometimes I can barely post due to the severity of my tinnitus. Many with severe tinnitus can't post. Others with mild or come and go mild tinnitus don't bother to post.

 

[jjflyman]

Is it because most of the people that have tinnitus are older and thus use the internet less? Or some other reason

I was thinking about that too. They say 50M Americans have tinnitus, so it would make sense that 100's of millions worldwide suffer from tinnitus.

Well, here is my thought:

Maybe millions of Americans suffer from tinnitus at any given time, but it is in constant flux, where new people get tinnitus, but others recover. So at any given time there are millions of people with tinnitus, only a portion continue to suffer after 2 years, for most, it is a temporary condition (although it can take many many months to fade away).

P.S. I think many more younger people suffer from tinnitus, because of their obsessive use of headphones and loud music.

Don't flame me, as this is just my opinion!

 

[Fangen]

1. People are not bothered like we are with their tinnitus = FALSE, so they do not bother tinnitus, at least join a Facebook group with a single click, just curious to know who else has tinnitus, but Facebook groups in the states of USA have 1 member on average.

2. People don't want to be reminded of their tinnitus by coming here = FALSE, people with many and few years of suffering from tinnitus come here.

3. People are not interested in discussing their tinnitus online / in a forum = FALSE, those who have tinnitus are very interested is discussing about their tinnitus, you are the proof of it, you are so obsessed that you are every day pending from the forum.

4. People are not aware that this forum exists. = FALSE, I know the most important tinnitus forum in Spanish, it is the first thing that comes to you when you put tinnitus on google, and that forum practically does not move, participation is extremely low, on average one comment per day, and it is not because people do not know it but because the reality is that almost nobody suffers from this.

5. People don't want to sign up and only read the posts = FALSE, the guests that appear in this forum are the same users who are already registered but want to make sure that others are suffering not to feel alone.

6. People don't have access to the internet or have limited Access. = FALSE, United States is the first world power, rich and developed country with the greatest number of Internet connections, almost all are in network.

Why are you asking if you seem so sure about what is the truth or not?

 

[linearb]

The reason I personally tend to believe the "15% of people have tinnitus, 1-3% of them severely" is that it aligns pretty well with conversations I've had with friends, family, coworkers. Especially if you start talking to musicians, motorcyclists and machine-shop workers, it seems like everyone either has some degree of tinnitus, or knows someone who has it badly. My guitar teacher has constant crickets. The guy who I tried to buy some motorcycle helmets from has it badly and always tells his clients to wear earplugs, etc.

I have about a dozen friends and family members with tinnitus, which ranges from "I hear a high pitched sound when I'm in a quiet room" to "I hear a high pitched shriek in all environments, which cannot be masked by anything". So yeah, I'd say that at least 10% of the people I k

Not one of these people has registered an account here, or even seemingly spent much time thinking about the problem. In fact, one of my friends with the "loudest" ringing in terms of masking level/intrusiveness, didn't even know what 'tinnitus' was and had assumed it was just a normal age-related thing. One of my uncles had tinnitus for 10 years before he even realized it was an internal noise -- he moved from the country into the city, and then realized that the "birds" he had been hearing for a decade was actually tinnitus.

This is similar to other chronic conditions I have dealt with -- it seems like for any given crappy chronic illness, some majority of people suffering from it are content to trust the information given to them by their doctors/etc, and not put energy into trying to google it or post on forums.

6. People don't have access to the internet or have limited Access. = FALSE, United States is the first world power, rich and developed country with the greatest number of Internet connections, almost all are in network.

LOL. The US is faaaaaaaaar from 'greatest number of internet connections'.
http://www.businessinsider.com/why-us-internet-services-stink-2016-1
https://www.nytimes.com/2014/10/31/...internet-speed-and-affordability.html?mcubz=0
https://www.scientificamerican.com/article/competition-and-the-internet/
https://www.theverge.com/2015/4/1/8...ernet-is-more-expensive-us-europe-competition

I'd say the US barely qualifies as a first world country anymore -- our infrastructure is aging across the board and at risk of being privatized because we haven't invested in it, the healthcare available to the typical poorer-than-average family is abysmal.