Forum Negativity Is Hurting Tinnitus Talk

[Jack Straw]

I foresee this thread potentially causing some controversy and potentially sending a lot of hate my way, but I feel it is important to share my experience / thoughts. I will not be naming names or pointing fingers. This is just my observations of browsing this forum for a long time. I apologize for the length of it.

I have been a long time lurker of this site, but have never really participated. I recently have been struggling with my long time tinnitus due to a recent sound exposure making it worse unfortunately. In my sorrow I thought I would come here for some support to be able to talk with people who understand this illness. (No one else that I interact with has this issue and it is hard for them to understand) Upon visiting the various boards (Support, Introduce Yourself, etc) I was able to find valuable information that I never thought of before. I also found a lot of negativity.

This negativity took many shapes and forms. People (not all) were very pessimistic, arguing over minimal things, or talking down to others because they have been dealing with tinnitus longer or in worse ways. I also was crushed when I would see someone ask a question like "I was thinking about going to a movie theater. What precautions should I take?" only to be met with responses like "enjoy making your tinnitus worse", "dont go", "how stupid are you?" I understand the concern some people have over these issues and situations, but the way people express them are very dismissive and blunt. On top of that I see a lot of fear mongering on here as well trying to scare people to not do things because they themselves can't do it. I am also sad to see that some users on this forum want to make others as miserable as they are. I know misery loves company, but it is a selfish and cruel thing to do to try to hinder people's happiness.

I know the first thing people will respond to this thread with is, "Were just trying to help them!!!!!!". I understand that, but the way you express it and the attitudes in which you convey it is demoralizing. We are very vulnerable people and we have to find happiness where we can. It would be more beneficial to be compassionate in our responses than blunt, hurtful and/or giving false (unscientific) answers.

Many responses that are given on here are said as fact. To touch on my previous example again, "Going to the movie theater will make your tinnitus worse." Such a statement as this is not only wrong, but it is also not helping our community. There are MANY factors that go into play when it comes to tinnitus and what can and will effect it. It is good to know the risks, but to state something without scientific proof is wrong. Yes there is a chance that going to a theater can make tinnitus worse if ear protection isn't used and it is too loud. Yes it is okay to tell someone your experience doing something, BUT many people with tinnitus go and do things with and without hearing protection and are just fine afterward. I'm not saying people shouldn't wear protection or be cautious, but what effects you may not effect them. There is a difference between posting scientific articles or giving advice based on experience vs saying your personal experience is a fact that will apply to all tinnitus sufferers.

The main reason I am posting this is because over the past couple of weeks my tinnitus was getting better for me. It wasn't as intrusive and I could somewhat get back to my life. Upon reading and browsing this forum I noticed that my overall mood was getting worse, my tinnitus seemed worse than before and I was having a lot more negative thoughts than positive ones. It wasn't until yesterday when I realized that it was because I was spending a lot more time on this forum and absorbing the negativity from it. I feel like this could be a very helpful, inspiring and supportive place for people, but I feel new comers and current users may potentially be harming their mental health and tinnitus more than they are helping it by staying here. I don't have an answer how to fix this because people themselves have to make this change rather than the moderators. My only thought would be to hide negative comments that get enough "downvotes", but still show them if someone wants to see it. Somewhat like reddit, even though some users don't like that format.

For those who will tell me "Well it is easy for you see things that way and be optimistic because you don't have it as bad or suffer as much as me or etc." I want you to understand that we all suffer in life and deal with a vast amount of pain. I'm not going to sit here and say "I have had a worse go at life than most because I have this, this and this." That doesn't help the conversation or make anyone feel better.

Remember that someone else's worst day may be a cake walk for you, but it is still that persons worst day. Just like your worst day is a cake walk for someone else.

I will try to respond to this thread and discuss this if anyone cares to. I am going to try to now limit my time here because I now know how much the negativity here can effect me.

Maybe I'm just being a baby and not cut out for online forums. Regardless, I wish you all the best and hope you have a great day.

 

[Contrast]

I hope I'm not the one in particular you are calling out, I try to give the most scientific answers possible.

And I am a huge fan of having treatments for tinnitus and related conditions that rob people of their lives.

 

[Jack Straw]

I hope I'm not the one in particular you are calling out, I try to give the most scientific answers possible.

And I am a huge fan of having treatments for tinnitus and related conditions that rob people of their lives.

Not at all. I'm not talking about a specific person. Just something I noticed about the community as a whole. I am happy when I see sham treatments exposed to help stop someone from wasting time and money.

 

[Hazel]

Hi Jack, you make some fair points. I agree there can be a lot of negativity, and it's not helpful. But at the same time, it's a public forum and people come here because they're suffering; it's hardly realistic to expect positive attitudes all round.

It might also interest you to know that Tinnitus Talk is working on several projects to counter the negative effects that any forum suffers from, by providing more objective and evidence-based information, i.e. fixed content, on the site. The biggest project in that regard is the Tinnitus Guide, which will provide well-balanced advise and information for anyone with tinnitus seeking help online. This will provide some balance to the forum. Let me know if you're interested in helping out with this project.

 

[Jack Straw]

Hi Jack, you make some fair points. I agree there can be a lot of negativity, and it's not helpful. But at the same time, it's a public forum and people come here because they're suffering; it's hardly realistic to expect positive attitudes all round.

It might also interest you to know that Tinnitus Talk is working on several projects to counter the negative effects that any forum suffers from, by providing more objective and evidence-based information, i.e. fixed content, on the site. The biggest project in that regard is the Tinnitus Guide, which will provide well-balanced advise and information for anyone with tinnitus seeking help online. This will provide some balance to the forum. Let me know if you're interested in helping out with this project.

I am glad to see that something like that is being offered. It will be great for newcomers to learn and read.

I don't expect everyone to be happy go lucky in every post as well. I understand sometimes people need to express themselves and not everything is sunshine and roses.

 

[Markku]

What @John CC posted the other day made my day, and thankfully most of the feedback people send us is of the similar kind (which also seems to be conveyed in the poll results above and in things like our Satisfaction Survey from some time back):

Hi everyone, I am new to tinnitus, only several weeks in. Not the world anyone wants to enter, but I did, and what I found at the start was an understandably pretty dark, forbidding, unrelenting touch of cruelty. Then I found something that helped me tremendously. As I surfed the waves of the internet, by happenstance more then good management, I found Tinnitus Talk, and a light into the darkness. It was all those people who participate in this forum, those who run and created this forum, and those who have offered insight, thoughts, and support.

I found those people who helped me realize it was more than just me, that there are those who live with, survive it, but also leave it behind them in the rearview mirror of life. It was the good, and even the not so good, stories that gave me not only an insight, but also something more important, hope. As noted in the movie Shawshank Redemption 'Hope is a good thing.'

To all those who responded, have made comments, and just wrote a story, or asked for support, I thank you. So for me the good news is that years ago @Markku created Tinnitus Talk, operated it, and people started partaking in it. I have bec0me a benefactor already, and intend to do so regularly.

My tinnitus is in both ears, and while several days ago it rang continuously for 2 days, though at different volumes, at times now it is appears to disappear, at other times I don't notice it, at other times I do, providing me, with caution, a bit of hope. I know the road ahead is only just entered, and I am not even out of Munchkin Land on the Yellow Brick Road. But at the very least I feel there will be a number of Scarecrows, Tin Men and Lions with support, as I will try to do likewise for others.

Well I guess it is time to go back to reading Melville's Moby Dick (quite a story, and an interesting read).

Thanks,
John CC​

However, you indeed do make fair points, @Jack Straw. Some of the concerns you've brought up have been on our minds for quite a while, and we really hope the Tinnitus Guide will be able to neutralize some of those. It's going to be featured in a very prominent way here. Thus far it looks like we're also getting some academics / professionals to review the guide's content. It's a lot of work, the group of volunteers working on it have already spent a significant amount of time on it, including multiple Skype conferences to coordinate all the efforts. @Hazel has been an integral part in the Tinnitus Guide, she's done an exemplary job managing the volunteers and overseeing all the parts of the project, which we're all very grateful for.

What every regular member can also do, on their part, is to help provide a balanced view in the threads. See someone fear mongering or being overly negative (which can be quite subjective as is tinnitus itself)? Comment something more positive, or share your opposite experience.

I commend members like @Ed209, @billie48 and others for doing just that.

Many of us using the community are in bad places; desperate, frustrated, anxious.

It's quite easy to allow our negative emotions to overrule our sense of judgment and change the way we would normally act and behave.

We can start acting on impulse and raw emotion. Tinnitus can definitely make some of us take out our stress and frustration on the people around us.

This is even more compounded in a mostly anonymous setting.

That said, we should still try to be understanding of each other and be kind to one another. Ruthless and utterly insensitive comments and personal attacks are not really acceptable under any circumstances, so upon coming across such content, we would encourage members to use the "Report" link found below any post to alert us, and we will take a look and delete / edit, where we feel is necessary.

To a brighter future

PS. It's no doubt true that some people benefit from staying away from the forums - if anyone feels that way, it's definitely encouraged to try! Live support groups can be more beneficial to some people, as well. The American Tinnitus Association and British Tinnitus Association have lists of support groups on their websites.

 

[Jack Straw]

What @John CC posted the other day made my day, and thankfully most of the feedback people send us is of the similar kind (which also seems to be conveyed in the poll results above and in things like our Satisfaction Survey from some time back):

Hi everyone, I am new to tinnitus, only several weeks in. Not the world anyone wants to enter, but I did, and what I found at the start was an understandably pretty dark, forbidding, unrelenting touch of cruelty. Then I found something that helped me tremendously. As I surfed the waves of the internet, by happenstance more then good management, I found Tinnitus Talk, and a light into the darkness. It was all those people who participate in this forum, those who run and created this forum, and those who have offered insight, thoughts, and support.

I found those people who helped me realize it was more than just me, that there are those who live with, survive it, but also leave it behind them in the rearview mirror of life. It was the good, and even the not so good, stories that gave me not only an insight, but also something more important, hope. As noted in the movie Shawshank Redemption 'Hope is a good thing.'

To all those who responded, have made comments, and just wrote a story, or asked for support, I thank you. So for me the good news is that years ago @Markku created Tinnitus Talk, operated it, and people started partaking in it. I have bec0me a benefactor already, and intend to do so regularly.

My tinnitus is in both ears, and while several days ago it rang continuously for 2 days, though at different volumes, at times now it is appears to disappear, at other times I don't notice it, at other times I do, providing me, with caution, a bit of hope. I know the road ahead is only just entered, and I am not even out of Munchkin Land on the Yellow Brick Road. But at the very least I feel there will be a number of Scarecrows, Tin Men and Lions with support, as I will try to do likewise for others.

Well I guess it is time to go back to reading Melville's Moby Dick (quite a story, and an interesting read).

Thanks,
John CC​

However, you indeed do make fair points, @Jack Straw. Some of the concerns you've brought up have been on our minds for quite a while, and we really hope the Tinnitus Guide will be able to neutralize some of those. It's going to be featured in a very prominent way here. Thus far it looks like we're also getting some academics / professionals to review the guide's content. It's a lot of work, the group of volunteers working on it have already spent a significant amount of time on it, including multiple Skype conferences to coordinate all the efforts. @Hazel has been an integral part in the Tinnitus Guide, she's done an exemplary job managing the volunteers and overseeing all the parts of the project, which we're all very grateful for.

What every regular member can also do, on their part, is to help provide a balanced view in the threads. See someone fear mongering or being overly negative (which can be quite subjective as is tinnitus itself)? Comment something more positive, or share your opposite experience.

I commend members like @Ed209, @billie48 and others for doing just that.

Many of us using the community are in bad places; desperate, frustrated, anxious.

It's quite easy to allow our negative emotions to overrule our sense of judgment and change the way we would normally act and behave.

We can start acting on impulse and raw emotion. Tinnitus can definitely make some of us take out our stress and frustration on the people around us.

This is even more compounded in a mostly anonymous setting.

That said, we should still try to be understanding of each other and be kind to one another. Ruthless and utterly insensitive comments and personal attacks are not really acceptable under any circumstances, so upon coming across such content, we would encourage members to use the "Report" link found below any post to alert us, and we will take a look and delete / edit, where we feel is necessary.

To a brighter future

PS. It's no doubt true that some people benefit from staying away from the forums - if anyone feels that way, it's definitely encouraged to try! Live support groups can be more beneficial to some people, as well. The American Tinnitus Association and British Tinnitus Association have lists of support groups on their websites.

I'm excited to see the guide that comes out especially since it is being viewed by professionals.

 

[Alex Prime]

To be honest, most sport forums I visit are like way more negative than what we have here!

But I understand you.

For myself, I rarely met rudeness here, I can think of only one case and it was a small thing.

 

[Bill Bauer]

I also was crushed when I would see someone ask a question like "I was thinking about going to a movie theater. What precautions should I take?" only to be met with responses like "enjoy making your tinnitus worse", "dont go", "how stupid are you?" I understand the concern some people have over these issues and situations, but the way people express them are very dismissive and blunt.

What would you have us say to people who are about to risk throwing their life away for a movie (that they can safely watch at home) or a concert?

We are very vulnerable people and we have to find happiness where we can.

Let me correct you here: we have to find happiness safely where we can.

It would be more beneficial to be compassionate in our responses than blunt, hurtful and/or giving false (unscientific) answers.

Does "I am sorry that you are in this situation, but your situation might get a lot worse if you do the unthinkable and attend that event" satisfy the compassionate, non-hurtful requirement? If not, please provide an example of an alternative that would convey the same information, but that would satisfy those requirements that you have in mind.