Because you have been incredibly arrogant and demeaning to me when I tried to tell you how much I suffered myself.
If I had joined TT today, my fear is that I probably would have killed myself. Pretty much all the support has gone or been driven away.
I'd say volume wise, I'm "moderate" yet telling someone that I have "moderate tinnitus" probably won't do me any justice and will just make them think "okay it's just a small problem"
@Ed209 it sounds like you are on good terms with your tinnitus these days. Is it severe tinnitus? I think our ability to cope and past anxiety, trauma, and likeliness to develop depression or have depression regardless of tinnitus plays a role in habituation as well. My tonal tinnitus can be canceled out at 45 decibels though I do sometimes here the tonal in the car.
My reactive winding up tinnitus I can hear in an airplane.
I highly doubt anything anyone reads on the internet is going to kill them or not kill them. Tinnitus on the other hand coupled with doctors playing down its effects with the classic, 'ignore it and get on with your life,' very nearly did kill me and has killed many others who committed suicide right after their cosy habituation chat with a doctor.
I highly doubt anything anyone reads on the internet is going to kill them or not kill them.
If I had joined TT today, my fear is that I probably would have killed myself. Pretty much all the support has gone or been driven away.
Has the situation really improved or is it just bravado?! An attempt at a self fulfilling prophecy.
I stand by what I said. Telling people the noise is still the same but they're 100% better, when it's not actually true, can be very damaging to the mindsets of people who then feel like failures for being unable to achieve the same blissful state of insouciance.
I told you how much I was struggling and that I wish I had tinnitus I could match at 60 dB and you scoffed and publicly called me untrustworthy. Then you posted multiple demeaning memes/cartoons quoting my conversation with John Adams and calling it bolox.If an apology is owed it will be forthcoming.
But could you please refer me to my crime.
Accusations need to be substantiated my friend.
I told you how much I was struggling and that I wish I had tinnitus I could match at 60 dB and you scoffed and publicly called me untrustworthy. Then you posted multiple demeaning memes/cartoons quoting my conversation with John Adams and calling it bolox.
The earlier part seems to be deleted but as you referenced it in this thread clearly you remember as well.
Many debates have been raging here about the lack of awareness (or distinction) between different tinnitus levels amongst the general public, which is only amplified by the ignorance about this condition in the medical field and reinforced by propaganda from various so called tinnitus associations, whom are essentially just the recruiting mills for the coping industry.
I think it is important to have some kind of a unified, simple and comprehensive scale in place, which would set the record straight for the average person "out there".
Here is my proposal:
It is important to understand, that there are 4 main levels of tinnitus.
Let's call them Mild, Moderate, Severe and Catastrophic.
It is equally important to understand, that each level is a huge step upwards from the previous level.
1) MILD LEVEL
If you are in this group, congratulations.
This is by far the largest group and roughly 90% of those affected by tinnitus fall within this group.
It might be a rough go at first, but you should be able to adapt within about 6 months and carry on with your life just as before...
As long as you are careful and don't get exposed to further acoustic trauma, you will probably live out the rest of your life problem free.
Metaphorically speaking, you will see the gate to hell, but you will most likely never find out what is on the other side of it.
2) MODERATE LEVEL
If you are in this group, the way you live will most likely be permanently altered and at this stage, tinnitus has the potential to destroy your life altogether.
This is where your genetic make-up and tolerance levels start becoming really important, since they will make the difference between a miserable life filled with horrid, permanent torture, or a life that is still tolerable.
Coping schemes might make a difference at this level, depending on your personality and the way you are wired.
If I had to use the hell metaphor again, you are now through the hells gate and the flames are licking your feet.
3) SEVERE LEVEL
Now you are in the big leagues.
You are most likely far beyond any coping scheme currently available and every millisecond of the rest of your life will be consumed by trying to suppress extreme anxiety and suicidal thoughts.
You will lose your ability to sleep, relax, focus, read and work and you are now socially dead... just off the top.
The only thing that might still keep you alive at this point is not wanting to cause the undue stress to your family and the hope, that there might be a cure (or at least some form of EFFECTIVE treatment) coming out soon.
Your life is now pure survival and there are no more good days.
You are at the deepest level of hell with nowhere to turn and no help available.
4) CATASTROPHIC LEVEL
You are now the walking dead.
Your hope for any cure is gone, since you realize that your demise is a matter of weeks, maybe months...
Too short of a time for anything to materialize.
Any metaphors or hell analogies fail at this point.
If there is a hell, I doubt that they are able to deliver THIS level of torture and cruelty.
Simply put, catastrophic tinnitus is hands down the very worst thing that can happen to a normal human being.
Those affected will now focus on finding the safest and least traumatic ways to kill themselves at the earliest opportunity... assuming the extreme stress and insomnia does not kill them first.
This is of course a very general guide.
There are always exceptions out there and there are many "in between" levels as well.
This is just an attempt to generalize and simplify tinnitus to the point, where your average reader can actually begin to understand it.
Feel free to make any suggestions as how you think this guide should look like.
Does the above mean that your spike (that was caused by an MRI) is over?It became what it is today around 3 and a half years ago.
Wow!!! You are one seriously messed up dude if you kill yourself based on what some members say on a support forum. Is this a millennial thing?
How would you classify these with regard to volume? Masking is one way to get a handle on it. E.g. would you say - if your tinnitus can only be heard in a quiet room, or is masking by the TV or white noise, it's mild?
Is moderate tinnitus a noise that can be heard over most things but blocked by others?
And severe tinnitus something that can be heard over everything?
Or is that too a generous a definition for severe - many people here, perhaps most, would say they can hear their tinnitus over everything, or perhaps everything except the shower, yet within that group there are probably large variations in volume?
As @Ed209 has correctly pointed out we indeed all are on the same ship.
I hope nobody minds too much if I offer another analogy:
The ship is slowly sinking and some of us are trying to figure out a way to send an SOS message to be rescued.
But some don't like this approach, because they claim that it could panic people and this could drive them to jump overboard.
This is why they prefer to have the house band to keep playing till the very last minute instead, while pretending that everything is just great.
I have a feeling that this had already happened to another boat once upon a time...the results were not that good.
There are definitely habituation stories that are real. I don't think these stories are being questioned here. There are also people who say they have severe tinnitus and they're still living lives they find worth living. However, I have yet to meet someone with severe, or perhaps I should say catastrophic, tinnitus whose life wasn't permanently altered. I've also seen users on here saying one minute they're not letting tinnitus stop them and then mention things they won't do due to their tinnitus anymore or being utterly exhausted the next minute. This is not addressed at anyone specifically, just a theme I've noticed.
Everyone should be allowed to share their experience, I completely agree with Ed on that. If someone can live well despite having tinnitus, they're allowed to tell their story and to motivate other people. But this regularly turns into 'everyone just needs to change their attitude and their brain will tune out the tinnitus'. I'm not saying this happens every time but it still happens too often.
Also, many people, when they're struggling with recent onset tinnitus or a spike, want to be told that they'll be okay again. We shouldn't lie to these people and tell them that their tinnitus will never bother them again but scaring them doesn't help either. In the beginning, support is essential. If their situation doesn't improve in months or years, then a more honest discussion would be appropriate. This doesn't mean that severe tinnitus should be sugar-coated.
But I also agree with other users that severe-catastrophic sufferers are often told that a change of heart would turn their debilitating conditions into mere annoyances. I'll never forget reading "They forget that the mental struggle is really what keeps T intrusive and loud" on here by a veteran who says they have severe tinnitus. A resilient mindset helps me to cope but it doesn't negate the impacts of t/h.
Habituation doesn't come with a happy end for everyone. I could call myself habituated but that wouldn't be a success story. But I think most people on here understand tinnitus can be debilitating and that someone's attitude, in that case, can only change how a person reacts to these limitations and not break them (completely).
Maybe true, but when you're in a state of utter desperation, being driven insane by torture and the prospect of your life being totally ruined, it is understandable. Especially if you were already prone to emotional instability. I just try and have understanding. Some people are in fact very weak.Wow!!! You are one seriously messed up dude if you kill yourself based on what some members say on a support forum. Is this a millennial thing?
I think for the general public keeping it simple would be describing it in terms of the symptoms rather than the emotion those symptoms elicit. Beyond mental health, what other conditions diagnose severity by emotional reaction? It's easier for the public to clump our experience as a mental health concern if we're using those factors as the only measure.The main thing is the intrusiveness....volume is secondary and it is not that accurate means of assessment from what I'm able to gather.
At the end of the day, what matters the most is how this affects your life.
But this kind of stuff would be way too hard to convey to the average reader out there, whom most likely never even heard of tinnitus.
It really needs to be kept as simple as possible minus all the possible variations.
If I understand your post correctly, you are suggesting to focus on the symptoms and leave the emotional distress out.I think for the general public keeping it simple would be describing it in terms of the symptoms rather than the emotion those symptoms elicit. Beyond mental health, what other conditions diagnose severity by emotional reaction? It's easier for the public to clump our experience as a mental health concern if we're using those factors as the only measure.
When I want someone to emphasize with my tinnitus pain, I do not describe my emotional reaction. I describe the symptoms: the volume, the unrelenting noise, and the further complications of hearing loss and hyperacusis. That alone generates sympathy. People recognize those symptoms as awful. People even recognize that the soft ringing they hear only when they plug their ears is not comparable to what I hear all day, every day. That the fleeting tinnitus they might occasionally experience isn't the same as dealing with it every day.
When we talk only in terms of emotional response, it's easier for others to shrug it off. Maybe because our possible emotional responses — quitting a job, avoiding social situations, feeling despair — are not symptoms isolated to tinnitus sufferers.
But a constant loud noise that never leaves, that permeates everything we do? That seems to invade every recess of our brain? Those painful symptoms are unfortunately ours alone.
Wow!!! You are one seriously messed up dude if you kill yourself based on what some members say on a support forum. Is this a millennial thing?
Thanks! I will try better as well. Sorry if I offended youWell it looks like a misunderstanding on both sides.
If I upset you then I am sorry Kelp.
I will try to do better.
Dave x
As @Ed209 has correctly pointed out we indeed all are on the same ship.
I hope nobody minds too much if I offer another analogy:
The ship is slowly sinking and some of us are trying to figure out a way to send an SOS message to be rescued.
But some don't like this approach, because they claim that it could panic people and this could drive them to jump overboard.
This is why they prefer to have the house band to keep playing till the very last minute instead, while pretending that everything is just great.
I have a feeling that this had already happened to another boat once upon a time...the results were not that good.
This is a very perceptive analogy @Wolfears of what is happening and is very relevant to the BTA and ATA situation too.
They are both small boats aimlessly floating about in rough seas and occasionally sending out the odd dampened down message about a 'struggling' crew but never actually having the balls to full on launch the lifeboats, fire off all the flares and send out a major SOS night and day for help from every boat and rescue team that will listen.
I don't take it personally, I honestly don't give a shit, he annoys me, and has driven other members out. If you kill yourself after coming online due to not enough support or whatever, you're screwed, you should probably not have access to the internet, mom should put some filters on at the very least.Please read my post on page 3. But to address this simply:
Suicide rates have increased in all age groups since 1999. Today, in an internet ruled world, more middle aged people are killing themselves.
A person does not just kill themselves because of an internet post. They kill themselves because they have a lot of problems and anguish already going on. The cheap, readily available amount of human interaction on the internet that is more often flavored negative energy, merely bursts that dam.
Millennial thing? That's a rather low effort thing to say. I suppose millennials do have a stereotype of getting offended easily, just like how you were offended very easily when @Ed209 mentioned his dad in that other thread. From the perspective of a non-participant in that thread, you had to have gone through some mental gymnastics to take that personally. It was painfully obvious to me just how irrational your response was. Your grudge against Ed209 is pointless, and if I had to guess, something entirely fueled by the sheer terror of your own tinnitus. Only someone so tortured could possibly say the things you did. I truly am sorry that you suffer so. Just please, don't take it out on other members.
Yes absolutely.Totally understandable and the exact reason the habituation myth exists
Let me explain...... If my T dropped to a lesser level, I would wait several months before even mentioning it here..... But in the real world I would never ever utter it to a soul because I know how callous this monster is and the next day I could be back to severe or worse and people would completely lose faith in my mental state. 'Oh him and his T one minute he's fine the next he wants to die. It's all in his head!'
This I believe is the reason people stick to the 'habituation' story. Telling people you actually got better or the volume lessened is too much of a risk. Better to say, 'oh it's bad as ever but I'm getting used to it.'
That is habituation debunked in a nutshell and even though they won't admit it, will strike a chord with all of the 'Ive beaten loud T' brigade.
I don't take it personally, I honestly don't give a shit, he annoys me, and has driven other members out. If you kill yourself after coming online due to not enough support or whatever, you're screwed, you should probably not have access to the internet, mom should put some filters on at the very least.