Success Stories — Dealing with Our Feelings in Responses

[Tybs]

Not sure if this fits here, but I could not find another suitable tinnitus category: feel free to move it elsewhere if needed.

We've had a few success stories lately that ended up in some disputes or quite strong (dis-)agreements. In hindsight, I think I'm partly to blame for this as well, and it might be good to reflect.

For reasons well understood, we sometimes tend to "correct" certain posts where people share how their tinnitus has been dealt with. Usually it's a way of wording that can feel "pushy", or it seems like the poster wants to bring out his "one and only cure for all". This can result in us reasonably attempting to take the poster back to the surface, and explain tinnitus usually does not work like that.

I do not doubt that we give our corrections in good spirit: however, I'm getting a bit worried that the whole purpose of the success stories can get undermined if this trend continues. I remember quite well that when I first came to this site, the success stories were my main source of fuel. Reading them not only gave me hope for finding my own path with tinnitus, it also distracted me from my sounds and advanced my own habituation in a natural and passive way. I read some of them over and over again, which quite lifted my spirit and gave me courage to face another day.

The current risk is: if we fill every success story with discussions about what is right or not, and why things won't help us or others... it kinda crushes the hope. Especially newcomers, who will tend to read recent stories first, can easily get lost in the discussion and feel like everything is too complicated and that there is no way to deal with their own case. This can drive them off or make them stop researching completely: which is horrible, as a lot of content on this site is like a treasure for tinnitus sufferers. Be it habituation, research, treatment... there are tips and information on almost every subject, and experiences from people with similar cases.

I believe we should motivate visitors to keep searching, both in an active and passive way. Therefore, I made a decision for myself: I'm not going to start or continue discussions in the success stories. All I will do there is either congratulate the poster, or remain silent if I for some reason disagree or feel bad about the post. I can use every other section of the site (or even PM) if I feel the need to vent or discuss anything in reply to a success story.

For you guys: this is just my decision. I still assume that we all want to help out, and you may feel free to disagree and act differently. I don't have any right to (and won't) judge. I do ask though that everyone at least reflects on the posting progress within success stories and asks him/herself the question of "How would I feel about this as a newcomer?".

Let's keep building towards a community that manages to support every person with tinnitus. Thank you all for what we have here

 

[Autumnly]

Most of the success stories that get called out boil down to "we can all find something that works / the only people that struggle are negative".

Just look at the recent story. The original poster literally said, "There aren't millions of people in tinnitus distress". When other people gave sources to show that this isn't correct, the studies and the users got called negative. Not once did the original poster retract their statement or admit to being wrong. People who eventually get better and can cope well with their tinnitus oftentimes don't seem to understand the harm it can cause severe sufferers to constantly be told it's their fault for not getting better.

It's not a community that supports all people with tinnitus if we constantly get told not to speak out because it might induce some short-term anxiety in people who are probably going to get better anyway.

So if you stay silent when misinformation is being spread, I ask you: What do you do for severe sufferers? Do you donate, volunteer, sometimes leave comments or speak openly about the suffering tinnitus can cause? Do you do anything to help our cause?

 

[Tybs]

So if you stay silent when misinformation is being spread, I ask you: What do you do for severe sufferers? Do you donate, volunteer, sometimes leave comments or speak openly about the suffering tinnitus can cause? Do you do anything to help our cause?

In response to the "staying silent" part:

All I will do there is either congratulate the poster, or remain silent if I for some reason disagree or feel bad about the post. I can use every other section of the site (or even PM) if I feel the need to vent or discuss anything in reply to a success story.

I'm not advocating that we stay silent: but I do think it's good to use a different section of the forum to discuss the issues.

The first post of a success story is a personal description of what the poster went through. This is also the case in the story you are referring to: in her timeline, she describes that she read about tinnitus from different sources, she made her own conclusions and defined steps for herself to get through this ordeal. It is a personal story: we cannot fact check anything from it, because this is what she experienced and how she dealt with it.

The original poster literally said, "There aren't millions of people in tinnitus distress".

Correct, she said this: after the discussion started. Yes, this should be challenged. But the discussion itself could have been started elsewhere. In the story, she tells what worked for her: if we disagree with the "why", then a separate topic would suffice. By keeping the stories clean, we won't diminish their intended effect IMO.

 

[Autumnly]

The first post of a success story is a personal description of what the poster went through.

The sources they mentioned already made it clear what they thought about tinnitus, it wasn't a surprise to hear them say that they don't believe millions are struggling. They also don't seem open to changing their opinion on this.

Keeping newcomers uninformed isn't the way forward. We can support and encourage them without sugar-coating this condition. Many people who write success stories like the one we're discussing cite the same sources. So keeping those threads clean, just leads to more people believing that misinformation.

That user also said in their first post "our own negative reaction towards the tinnitus keeps it alive" and that we can all achieve habituation of perception if we let go of those negative emotions. Again, we can support people and give them hope without making it seem like the Cognitive Model of Tinnitus Distress by McKenna applies to everyone.

Their first post was more than them just talking about what worked for them. Also, if you ask me for sources, accuse me of fear-mongering and say there aren't millions of people suffering, I'm going to post some sources.

 

[ASilverLight]

I agree with this. While some things should be called out - in a calm and friendly manner without diminishing what worked for the OP - not everything has to, and everything has a time and place. I personally really don't see the harm in having one section of the forum that's just full of positivity and hope. It's something a lot of us need, and if I'm being honest, continuously reading that.

A) This may have worked for us but it doesn't for everyone so stop saying it's a cure/stop saying it works
B) You still have tinnitus to a degree, you aren't cured, why are you posting this
C) Your tinnitus isn't noise induced, of course this works for you

or anything along the lines, anything trying to imply it won't work because it doesn't for everyone or you personally really really puts me down. It makes me feel hopeless and like I'm never, ever going to get any better or have a shot at my old life again. As this is a thought many of us go through initially, or for a very long time after, having one section where we can focus on positive thoughts and hope is necessary.

Also, no one is saying you cannot suffer. No one is saying you cannot discuss what may or may not work and focus on the NOT work part. No one is really saying that suffering isn't real, and if they are, then that IS something that deserves to be called out and discussed - but maybe away from the success stories, or only a brief mention thereof in these specific topics.

I really feel for people who have terrible tinnitus and I recognise your suffering. I believe that not everyone can habituate, that for some people, nothing works and it's an endless path of suffering. I want you to express your pain and your suffering, especially if it helps you. But I still do believe that there are many, many sections on this forum where you can safely do so, and I don't think success stories should be one of them.

As for the reasoning we shouldn't sugarcoat this, or shouldn't give false hope - we're not. Different things work for different people, obviously, and information on things not working is available everywhere else on the forum. People can still read these posts too, if they choose to do so.

I know that many may disagree with me, but to me, success stories is a source of positivity and hope and I'm tired of seeing people accused of lying or giving false hope or giving attention to the wrong kind of people/treatments just because it worked for them. Who are we to discredit their suffering and progress?

edit: a large reason why I mostly want to stay away from these forums is because there is so much negativity like this. Again, I'm not going to fault you for this, I'm suffering too, and it's natural to be negative with a condition like this. However, it's just not doing me any good because it feeds into my anxiety and depression and I really don't need that. The success stories kept me coming back, but now I don't even want to read those.

 

[Tybs]

The sources they mentioned already made it clear what they thought about tinnitus, it wasn't a surprise to hear them say that they don't believe millions are struggling. They also don't seem open to changing their opinion on this.

Keeping newcomers uninformed isn't the way forward. We can support and encourage them without sugar-coating this condition. Many people who write success stories like the one we're discussing cite the same sources. So keeping those threads clean, just leads to more people believing that misinformation.

Fair enough. This currently seems to represent a somewhat aggressive atmosphere though, at least to the readers who are unfamiliar with the backgrounds of the discussion. Would there be a way to prevent this, without downplaying the importance of the subject?