Forum Negativity Is Hurting Tinnitus Talk

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.

 

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.

 

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.

 

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

 

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.

 

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?

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

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.