Drop the Word ‘Negativity’ Once and for All

I feel the need to address an issue that has bothered me for some time now.

Most of us know that the curse of tinnitus has a very wide spectrum of severity, from barely noticeable, to catastrophic, and life threatening.

I will tell you that I have experienced virtually all brackets.

I have noticed over the past few years a tendency to refer to some sufferers as ‘negative people’ who write ‘negative posts.’

Frankly I am appalled.

One member of our team, who should surely have known better, once advised a new comer to this forum, to avoid reading posts from ‘negative people.’

Whatever does this mean?

There are times when each one of us feels overwhelmed by this curse, and feels the need to express our hurt, and look for a comforting shoulder.
To infer that anybody here is a ‘negative person’ is to add to that person’s burden of pain, and to register a disgusting lack of respect.

An admission of great pain takes great courage, firstly because we are admitting to ourselves our dire situation.
Then to step outside of ourselves and look for help amongst our fellow members, is to take a very big step indeed.
A very vulnerable time for us.

An admission of severity does not equate to negativity. The truth is always positive.

Some months ago @Hazel conducted an interview with the mother of tragic Gaby Olthuis, and did it with great respect.
If this website is to be what it should be, it must respect all levels of this condition.

Better by far to realise that if one has a lesser degree of suffering than another, one is indeed simply more fortunate.

Please consider these words, and find the charity to speak with kindness.

Dave x
Jazzer

 

My audiologist told me I should avoid tinnitus forums as they are filled with posts that may make you feel worse. She didn't use the term "negative people", but she said that people often have something else going badly in their lives which tends to permeate their attitude to everything that happens to them.

However that old saying about "if you could walk a mile in someone else's shoes" is one I've always tried to live by. Sometimes we use words that others may take offence to. Maybe that's part of our own conditioning - a word that has been used by our own parents, or that has struck us at one point as helpful to us, but may not be helpful to another person.

Let's all be kind to each other and think before we post. This is a great community. A literal life-saver for many. Let's keep it that way.

 

@Jazzer I will just use the word internet and private email and not give mention to specific sites. I have talked in private to many or to their family members because some could not post because of catastrophic failures. Some may be able to read posts, but some are not are not capable of posting. I won't be too graphic. Broken this and that. Major artery, vein and condition trauma. Blood filling up in the head. I have been informed by some family members that their loved ones have died. I also worked in level 1 trauma hospitals.

I now have severe somatic physical tinnitus and PT.
Before I had severe hearing loss tinnitus from getting my ears syringed. After 4 years it settled to a 6/10 which was still as loud as a loud microwave, but I had days when I didn't notice it. I can remember days when I got up at 8 am and did not notice my tinnitus until late in the afternoon. I would say what is that noise. I would say I forget that I had tinnitus.

There are many worlds (levels) of tinnitus and for some many physical trauma attachments. Unless one has experienced all extremes then I do agree with Jazzer Dave.

Agreed.

 

Very well spoken Jazzer (And nice to see ya around - I wondered where you went).

"Don't judge somebody until you walked a mile in his/her shoes" is words I deeply believe everybody should live by. There are several thousand shades of suffering. 1000 people can have the same severity of a condition, but suffer in 1000 different ways. We should all try our best to be kind and understanding to each other.

 

The way I see it.

Somebody is living in Pain - Noise - Torment - Fear - as many of us are, and plucks up the courage to tell the truth of it, only to be labelled a negative person.

I have studied psychology all of my life, but you don’t need a degree to recognise the hurt that this will inflict.

Whether members will take any notice of me, of course, I don’t know - but I just felt that somebody ought to raise this issue.
It hurts.

Dave x
Jazzer

 

Dear TDG - thank you - you are kind.
I was getting disillusioned, and to be honest, this issue was one of the reasons.
But it’s off my chest now.
I love your post
Dave x
Jazzer

 

This seems to be a common trait with people that grew up in dysfunctional families and developed codependent tendencies. They are incapable of processing emotions in a healthy way so they have to do it indirectly by controlling other people's behavior or outright denial of an obvious problem. The most frustrating aspect of this is when they actively attack someone for drawing attention to the problem rather than acknowledge the actual problem itself.

 

I get what you mean Jazzer.

I think the idea stems from the fragility involved with newly acquiring tinnitus.

It would be somewhat like losing a loved one to cancer, joining a support group and the veterans saying "yeah it hurts, it's absolutely terrible, join the party, what do you want from me?"

Not saying anybody has done that. Personally speaking, on days where it's really intrusive and I'm feeling frantic, hopping on here and the top thread being about suicide doesn't help. Do we feel those feelings? Hell yeah. Label me a snowflake as somebody else did... call me what you will. I genuinely AM in a fragile state, as I'm essentially mourning the loss of some hearing, and silence.

And I'm not speaking directly to anybody. Just saying how I feel.

 

I believe that this statement sums it up nicely Jazzer.
Tinnitus does not seem to be bound by any rules or limitations as to how loud and intrusive it can get.

A person who might be under the impression that he/she has somehow "conquered" tinnitus probably does not realize, that there are always higher levels of tinnitus hell, than the one they are currently at.

I had read quite few posts in which some long time sufferers (whom were able to adapt to their previous tinnitus) were hit with a level, which they did not even think existed.

Their reaction is usually a cross between shock, horror and complete disbelief, that something like that is even possible, considering they had everything under control.

Personally I would be very careful with declaring a victory over an elusive, erratic condition that can literally double or triple itself with no notice whatsoever.

Yes, if tinnitus gets bad enough, it will "stop you", no matter how much you declare to the contrary before the fact.
This pretty much applies to every human being, as we all have limits to how much we can take.

Every single one of us has limits to what we can tolerate and those who claim otherwise are full of shit.

 

“Find the charity to speak with kindness”

Spot on Jazzer...
Glad you checked in... your kindness and love are crucial to this forum.
Thanks Maestro... oops, I mean Jazzer.

DL xxx

 

HI @Jazzer

It is good to see you back on the forum as I haven't seen you for a while. I read your post with interest and want to say, it was a pleasure not to see it littered with expletives and expressions of rancour throughout, at the difficulties that tinnitus has put upon you, unlike some of your previous posts that I had given a wide berth, because I have found their content distasteful. This is not to say that one shouldn't express how they feel when distressed by tinnitus, on the contrary, I just believe it's much better when it's done without using coarse and profane language.

I am one of the people that have advised new members in particular, not read too many posts from negative thinking people and I stand by this advice. Veterans and those seasoned to tinnitus for around 12 to 18 months and beyond, are not so easily affected by adverse comments but usually, this is not the case for the newbie who's just a few weeks or months in with this condition. Tinnitus is intrinsically linked to our mental and emotional wellbeing. Depending on how severe it is, it can take a considerable amount of time for a person to accept and eventually habituate to it.

Whilst one is entitled to their opinion, I believe it can be very damaging for some people to continuously be reading posts that describe: TRT, CBT and other treatments for tinnitus as scams. Medications such as antidepressants make tinnitus worse and are all bad. Benzodiazepines like clonazepam are the worst things on earth and one is better off not taking it.

Some tinnitus treatments may not be purported as what they claim to be. I have had TRT twice with good results and know people that have had it and CBT and reported the same. I am not saying everyone will benefit as we are all different. However, when such negative bias is shown towards these treatments by people that have never tried them, or had tinnitus counselling or used white noise generators, they can be harmful to someone reading them who are on or about to start one of these treatments as they might believe them to be true and factual, which is not necessarily the case. Tinnitus is difficult enough to deal without adding more on one's plate. When negative comments about tinnitus treatments are not enough, some members and they know who they are, paste website links in this forum to back up their negativity, that all tinnitus treatments are scams and most medications harmful and ototoxic. I am fed-up reading the word ototoxic in this forum.

I will continue to advise people not to read too many negative posts, especially those about tinnitus treatments. If they are about to start one then stay away from All tinnitus forums. Many people that have contacted me for advice on tinnitus and those that I have counselled, have been advised by their doctors not to visit tinnitus forums too often because of negative thinking people.

Michael

 

I reject your post in its entirety.
You perpetuate the very attitude
I object to.

 

@Michael Leigh
I know that your post above is directed to Jazzer, but I would like to say a few words.
I think that we have agreement that at least 70% of tinnitus is caused from noise exposure.

I'll talk about one of my tinnitus areas of interest. About 22% get tinnitus from physical and that includes injury, but the amount with physical tinnitus is more than 22% of the postings on this site. Within this group tinnitus may be very high pitched as well as being somatic - which is a change in tone when head, neck and/or jaw is in a certain position. There are those within this group that need to describe what is going on in a descriptive graphic matter and sometimes it's not pretty. These ones often come for treatment ideas. For some, proper treatment might lower or eliminate their tinnitus.

Physical Tinnitus continued: What to do, what not to do, what vitamins or drugs to take depending on condition, what vitamins or drugs not to take depending on condition - is all questionable. The answers to any of this may be found from other's personnel experience or from often complicated research such as from the Direct Science journal.

So with not being pretty, also highlighted above, those with physical tinnitus come here to read postings that center in on what others post. They may also have questions and often will start their post by saying does anyone else have this. Those with non physical descriptive tinnitus don't need to read these posts, they can just focus on other subject tinnitus matter such as noise exposure.

 

HI @Greg Sacramento

I agree with everything that you have said in your post and hope that puts an end to the matter. ​

Regarding "negative thinking people". I am not referring to those that say they are having a difficult time coping with tinnitus, or even people that want to bring about their own demise. I understand their distress and the difficulties this condition can put them through. I endured 4 years of suffering trying to habituate to it for the second time. There were times, I had serious doubts I would make it but thankfully I did. The kind of negative thinking people that I am referring to, are type written about in my first post and they know who they are.

Take care and all the best
Michael

 

Jazzer is right about you Michael. You conflate negative people with people that disagree with you and in my opinion, you often give bad advice. You place people on ignore who tell you, you are wrong and why you are wrong.
So you demonize people for not agreeing with you.

Nobody wishes you any ill will. But you do foster some level of acrimony on this forum with your 'I will take my ball and go home' attitude which honestly, I find comical really. Quite adolescent.
If you think about it, you are if anything predictable. Your bad advice = your bad reaction to people's reaction to your bad advice. Harmony within the universe.
Please notice I didn't mention Greg's advice. Greg gives good advice.

PS. I know I am on your ignore list for disagreeing with you on so many occasions but I also know on a thread like this where Jazzer rejected 'your take' you are having a peek at my post. How do I know? Because I am a savant.

 

It is a bereavement, when our normal hearing and ability to enjoy particular activities are gone. Recognising this was the first step toward the beginnings of acceptance for me.

I lost my dad a few years ago. It was tough but life goes on. We all must face bereavements in our lives. They are never easy or fair, but still we carry on.

 

@Jazzer
@Michael Leigh

I just want to say that I like and respect both of you greatly, and I think each of you brings a huge amount of good to these forums with your different perspectives.

 

Man, that makes for harrowing reading. To know that it might all get much worse.

 

Generally speaking, if tinnitus is noise induced and if the sufferer doesn't do anything stupid, it probably won't get much worse.

But if there are other factors involved such as Lyme disease or neck/jaw alignement issues, it could turn into a nightmare.
I also wouldn't underestimate hereditary factors, which might run in the family.

 

It can get worse, if you make it worse. Tinnitus by itself, will not just jump a new baseline for no reason(majority of times). Tinnitus will not just create a new spike for no reason(majority of times). Lots of factors go into why tinnitus changes, so don't get nervous.

 

Mine was meds and then made worse by an MRI. Both my Dad and brother have tinnitus, but they deal with it much better, and my Dad wasn't 75 until he go it.

Sounds like I'm up the creek without a paddle!!

 

It's hard not to get nervous Fishbone!

 

@Mister Muso

Thank you for your kind words Mister Muso. I know how severe and debilitating tinnitus can be and the depths it can take a person to. A lot of people visit this forum for help and support. While others repeatedly condemn any form of tinnitus treatment unless it is a complete cure for the condition. This often serves to make the reader feel much worse. This is the type of negativity that I object to.

I wish you well.
Michael

 

That's why I am here to help newcomers like yourself. Take a deep breathe and relax....

 

That's right. In fact, it begs the question where does 'acute' tinnitus come from? I will give you my Dr. of Audiology's take which to me is plausible. Bad tinnitus is a precipitous brain event of equal weighting. Big brain change = Big tinnitus onset. Small brain change = more common benign tinnitus many inherit over decades due to aging for example....cellular/neurological decline. What kind of tinnitus do most have? Low level tinnitus they can live with. Why do they have low level tinnitus? Because it 'crept' in with very incremental degradation to the hearing apparatus over a long period of time. So slowly, that the recipient hardly noticed over time. A very incremental onset. Not so with acute tinnitus.

I complained to my audiologist about the sound level of my tinnitus and I told her it pretty much came out of nowhere. She believes I had a 'brain event'. A precipitous change in my brain physiology from which the brain reacted more violently aka acute versus more benign tinnitus. Seems plausible a more violent change in brain chemistry/physiology could morph the neural plasticity of the brain more dramatically to create a louder aberrant sound which is likely the result of more neurons recruited by this sudden change. She believes it was possibly a virus that caused my rather precipitous high frequency hearing loss and hyperacusis, the latter the brain searching for suddenly lost input from the auditory cortex and therefore turning up the gain.

Kind of along the lines you mention fishbone. A bit more background.

 

Nervousness is ameliorated by confidence and success. Your confidence has been shattered like is has with all of us in the early days. By successfully navigating the tricky relationship we have with tinnitus...each of our paths a bit different, your confidence will grow that you can 'live with this' and your nervousness will wane. Anxiety burbles up from the sub conscious that steers the ship. You can't willfully squelch anxiety with the conscious mind because the predicate of your nervousness...your true belief defining who you are lives in the underworld known as the sub conscious. The sub conscious eventually changes its view of this foreign invader we have no control over as you complete each day and survive it.

Hope that makes sense. That is the path most take. Horror gives way to...ok.

 

@Jazzer I understand where you're coming from, and I think we should avoid labeling people as anything. Having "negative opinions" on some difficult issues doesn't make someone a "negative person".

That said -- consciousness is an interlocking set of feedback loops, and there's a lot of evidence to suggest that people in distress states who consume a bunch of worst-case scenarios or even just "venting" (especially when it takes the form of suicidal ideation) is profoundly unhelpful to the person in the distress state.

So, I think that's where such adages come from, and I think it's coming from a good place. Gaby was a tragic case that we shouldn't sweep under the rug; she also had problems that are likely to be more severe than, conservatively, 999 out of 1000 people who read about her here.

People who are new to tinnitus, or any other terrifying distortion of anatomy or ontology, generally have pretty broken abilities to look at things from a rational and stats based viewpoint. So, without suggesting that Gaby and suicide should be a verboten topic, I would suggest that it's a topic which is directly detrimental to stick in the face of basically anyone new to tinnitus. If people want to kill themselves and do, I don't have a problem with it; I think it's basically pretty boring at best to anyone who's still interested in trying to live, though.

 

Here's an idea let's drop the word "Negativity" and replace it with hope. @all to gain is a perfect example, this individual is a new comer and needs lots of support in order to deal with the afflictions that tinnitus can bring on. I always push for threads that gives these people hope. A hope that they will be ok, a hope that they will be able to live a life even with tinnitus.

I see people bashing TRT, habituation and many other tools and techniques that have worked for many including myself. ALL OF US NEED HOPE, newcomers especially.

I stay on this site because I have RESTORED hope in MANY people and I still do it on a daily basis. Is it too hard to give people a hope that they will be ok? Is it?

People like @Michael Leigh may be liked or disliked by some people, but he has lived with tinnitus for 24 years. He's spot on about having a mindset when it comes to stuff like TRT.

Let's give people, especially newcomers more hope, that's all I can say.

 

Accusing any sufferer with any condition, of negativity is the most negative (i.e. hateful) comment I can think of.

The chances are that they are coping with their situation the very best way they can.

That was my only point - which I felt was really worth making.
I’m not interested in any protracted arguments back and forth.
I’m just relieved that some folks get my point.

Back now to semi-retirement,

love
Dave x
Jazzer

 

I agree. I don't see anyone in this thread making a protracted argument. Sometimes a member, often a new member will post and say that you can live a totally normal life. Sometimes they will add if you can't, then it's because of OCD. These are the only ones that I have fault with.