Support vs. Telling the Truth

This has been on my mind for some time now.

As we all know, tinnitus is not just a sound, but the reaction to this sound. The very core of the problem our psychological responce to the sound. We cant remove the sound, but we can manage our responce. By being positive about life, we can manage our problem, and our problem Goes away (for a lot of people).

This creates something interesting. This means that our problem gets beter or worse by how we and others respond to T.

Thats why, in the support forum, we want to hear positive things. Because by hearing positive things our problem gets less. Thats why a lot of members are almost exclusively positive. Support becomes the same thing as 'being positive'.

But, there is a different side to life. And thats the truth. Sometimes, even though we want to be positive, the truth is not. And that brings me to the following question.

When is the truth most important, and when is positivity most important?

You can see this dilemma at the thread with the woman from the Netherlands who wanted to end her life. This fact alone is negative. With negative responces to our T, our problem gets worse. On the other hand, this is happening. This is also the truth, so ignoring this woman would be walking away from the truth. You could say that the support forum is just for positive things, but personalliy I don't think this should be the case. The truth also needs to be there in order to support members.

Anyway, wanted to hear your thoughts about this subject.

 

The truth is very subjective. The truth can be both negative and positive.
There is a program in the US called "stand for the Silent. It is aimed for reducing bullying at schools. It is carried on by two parents, whose child killed himself after being bullied. So they go to schools and speak about suicide stories due to bullying. In Estonia 5 schoolchildren tried that program as well and as a result on two schools two children who ere not being bullied killed themselves. Psychologists said that speaking about suicide will have the strongest effect on the children who already experience a harsh reality and it it will leave the bullies and healthy children ignorant.
Therefore it is two different things to talk about the reality and to talk about suicide. In the bullying example it would be more efficient to speak about the results of bullying such as low self-esteem, problems with schoolwork etc. It is quite another thing to talk about suicide. People should not confuse those two things. It is like inventing a bicycle - eg. trying smth that has already been invented, or in this, has already been proven to have a negative effect.

 

Just to be clear on my stance since I was pretty vocal about it in the thread you mentioned, I have no problem with telling the truth. That includes the story of the woman from the Netherlands. My issue was that it was in the subcategory that is meant to uplift and encourage tinnitus sufferers. Let me ask, how exactly did that story do that?

 

This is a good question but difficult to answer. I think it depends. When I first got tinnitus all the feedback I got was that it will get better. If I had the slightest idea that it could get as bad as it is now, would I have wanted to know that? I don't think that would have been helpful. However, if you visit a board like this, I think you need to be prepared for both the good and the bad. If you look up any symptom on the internet you will most likely find out that you are going to die. If you are an anxious person you should never google any symptom or visit related message boards.

 

On the other hand, if you have tinnitus then lets be honest, most doctors are quite clueless. Therefore for some boards are the only place to find people who have visited good doctors and can give good advice. That doesn't go for tinnitus only but for other conditions as well. So its a dilemma.

 

Most doctors are clueless about tinnitus, I agree with that. But if negativity and suicide was a common topic on a support forum, then they would be absolutely correct in telling new tinnitus sufferers to stay off the forums. That then leaves people with little hope and help.

 

Thats why I like this board. It mostly has positive people!

 

I think it is fairly straightforward to answer the question.

Doctors must/should always tell the truth. Forum members like us - on the other hand - can choose our position. I am generally a no-nonsense kind of person. Others prefer to see the world through rose-tinted glasses. I don't.

When my Mother was diagnosed with pancreatic cancer in 2009, none of the public doctors who made the diagnosis had the courage to tell her the truth. They assured her that an operation would be sufficient to save her. I had to consult and hire a private cancer physician in order to get her notified of the seriousness of the disease. Because the public doctors were sissies who could not deliver "straight talk" at the same of the diagnosis, she could not take "corrective measures" in time.

She died 11 months later.

 

Im so sorry for your loss. I agree that in the case of your mother they should have told her upfront and that its actually against medical ethics not to do so.
However, Ive had juvenile arthritis since I was 9. Some people become paralyzed with it, but my doctor never told me about it. i found it out now, when Im an adult. According to medical ethics that is actually the right behaviour. Doctors have to tell the truth, but sometimes they also dont know what is going to happen. That was the same with my arthritis. I suppose if it had had become serious she would have told me about it, however it never did. Im also glad she never told me about the posssible side-effects. As the main "side-effect" of tinnitus is emotional distress, it would be highly unethical to tell patients horror stories. It would also not be correct, because the number of people for whom it becomes intrusive is small (5%) and the number of people killing them because of that is even smaller. Also, it is almost impossible to prognose the course of ones tinnitus. The number of people habituating naturally is around 70-80& so ig you are looking for a realistic approach, thats what doctors should tell patients. being realistic does not mean believing in the worst case scenario.

 

I agree! When I had it, a ot of people it me it would go away. There is nothing wrong with being positive, but how do you know? Same thing with other subjects. I think people should hear the truth first.

I think that positivity without the truth will do damage. The truth is more important. Telling people they will be fine all the time is not a way to support.

I think the woman who didn't want to live anymore is fine to discuss, but from that truth we need to draw conclusions that can 'support' us. For example: why did she do it? Did she have support? Did she have friends and familie? Did she tried everything? Etc.

 

This is a support section in forum, not a general discussion or awareness section. Truth is important, as is support. People come here looking for help, wanting to know it will get better, and how it will get better.

Reading a story about a woman that killed herself because of T and H is not supportive to person who just acquired tinnitus or is having difficulty with it. That's the truth, but it's not support.

It's common sense. The truth is T can really be difficult. It can drastically lower your quality of life until you become habituated. But most everyone here can learn to cope and eventually habituate. That's support, and that's the truth.

 

I think telling the truth is important but I wouldn't tell my mother she looked fat in a dress if she asked me--even if it were true. There's a difference in truth for truth's sake and hurting people. When I came here in Dec. 2013--just 4 1/2 months ago I could not have handled that story because I had no frame of reference--I didn't know then that it is a very small percentage of t sufferers and it would have reinforced my already frightening thought that my life was over. I was scared, anxious, depressed and didn't know where to turn after a month of trying to handle my t myself. The loving supportive people here told me exactly what to do to help myself. By being told that night that it would get better it became a self fulfilling prophecy--it got better.

 

Illness itself can be brought ON by negative thinking...look at stress and ulcers/heart attacks.....

The body acts as a whole. There is constant correspondence between the brain and the rest of the body..Immune system, nervous system, heart, breathing, metabolizing, digesting, and all the major senses, as well as pain of all sorts....

There is absolutely such a thing as a negative or caustic mindset that makes illness worse, or creates it of whole cloth. We can't cherry pick parts of our system. It all works as a whole. When it is on the one, we are thinking right. When not, often we are not.

Put another way, no pre-existing condition gets better with negative thinking. We have to make an effort to get well, especially with T, and in this case it is essentially ALL in the way we feel and think about it.

Many things in life besides T are bothersome, some extremely so. Losing ones' job after many years, a heartbreaking relationship, loss of a loved one through death, aging in general, and a million everyday annoyances. Most arguments are between two people without T. Most people that commit suicide do not have T.

Life is simply more bearable in itself with a positive mindset. T, being a part of life, falls into that as well. Everything
that life dishes out to us can feel far worse with a brooding, negative, overly sensitive mindset. On the other hand, everything can feel far better with a healthy, open-minded thought process, in which we don't magnify events, and constantly move on, with appreciation and understanding.....

We simply and literally ARE what we thing...nothing more or less

 

That is a great example of the different mind-set between those who have recovered or are recovering, than those who are like Kathi a few months ago, or like me a few years back, or those who are struggling mightily right now trying to hang on with an uncertain future. A few years back, when I was already suicidal, overwhelmed emotionally & physically daily, even hourly, by the immense sufferings caused by T, H and relentless anxiety/panic attacks with their myriads of horrible symptoms quite unbearable to the body, I didn't need to be told my condition might be for my life time. So when I went to the ENT for some hope and advise, I was told the only way to stop my ringing was to shoot me. Yes, that might be the 'truth' at the time or what my ENT believes. But ask yourself, when you are at the darkest point which most newer sufferers are when they come here for support, do you want this 'truth'? Does it help anything for your recovery? May be you can be helped? But I couldn't, Kathi couldn't. So are some newer sufferers who have contacted me for private conversation. They were in better mind set before with all the help and positive messages on the board. After reading that story, I can sense their tones changing back to the old, confused, scared and depressed state. Instead of feeling more positive for the future, T becomes unbearable. This is not helpful to their recovery. Someone's desire for free speech is done at the expense of these newbies' sufferings. I am not pointing finger at any body. But it is total arrogance for anybody who is no longer suffering from T to say on behalf of these struggling new sufferers that this story should help their recovery. We are not them. We have no such right to decide for them. Even this thread here on the support forum still trying to dwell on the tragic suicide story is not helpful. If I can make the choice, I will move this to where that story is now. This debate can go on without newer visitors reading it and be reminded of that story. My 2 cents.

 

Your right, i'm sorry I used that story to make my post. I would get it out, but I cant anymore. A mod can edit my post. Now Lets forget about that and go back to the issue, or else it will get attention.

I am a type of guy who wants to hear the truth. When I got tinnitus I wanted to hear the truth about it. You know why? Trusting on a lie is always worse then trusting on the truth. A lie will always result in disapointment. It will result in false information. It will result in people being misinformd, giving wrong advice, etc.

Sometimes we cant handle the truth. But, its better to stay away from the truth for a while and come back later. This still is not a reason to believe a lie in my opinion. You can say the truth, AND be positive.

 

I agree, but I think the tolerance level of every person is different. Some people can handle the truth and be positive, others cant. The one's who can't are more sensitive and that is why their feelings should be taken into consideration as they will be harmed the most.

 

Why is this topic removed from the support forum? This topic was created to think about the best way to support people. How can this not be relevant?

When I said a moderator could edit my post, what I was trying to say was remove the part about the woman.

 

Hope is the best of things. Sometimes its all we have. On the other hand false hope is the worse of things.

The truth is that most people cannot handle the truth.

 

Hi Scott
Do you have tinnitus? By which I mean tinnitus that is persistent and bothers you to some degree?

 

Yes....and it has gotten louder, but I don't let it bother me much anymore...had it about 3 years now....its funny, cause its prob the only constant in my life...have to give it some credit for being persistent...If my sales performance in real estate sales was as persistent as my T, would be a multi-millionaire now.....

I think I made it way worse in the beginning by focusing....was so obsessive.....I know its just a noise, but can take some getting used to. I think its more that you can't control it. You can only control your reactions(thoughts) about things, not the things themselves, even in your own brain.

How about you, LondonGirl? How is it living in such a loud city with T(London)?.....I'm in Chicago, another crazy loud place.....I stay away from the "city" part......nice, relatively quiet suburbs..

 

I think giving support should be the first thing to do before giving the truth. And some people should know the difference between the truth and just being completely negative and hopeless as I have found out unfortunately from some people It's frustrating when I'm trying to hold onto hope for a cure for the T someday soon and someone just comes in and doesn't wish me luck or anything and tells me "it's not going to happen" or "don't waste your hope on it because of this this and this". So even when you tell the truth I think keeping support in mind is always important first and foremost for T sufferers like me.

 

Hep C.. That one type of cancer have treatments/cures for them just recently..No one could ever tell you there will be no Cure because no one knows..And T is on a high list priority.. Our lifetime we will see something maybe even sooner then We think! And reading about how other illnesses and things are getting treated for just gives me plenty of hope and positivity that we will all be free of this! Health industry is startin to boooom

 

What is the truth with tinnitus? The truth is that it's a very strange symptom.

Some people ( as i can see, those who can't accept T for the most part)
Kee p their T.

Others see their T reduce or even disappear. ( i remember someone who worked in fireguns and cars = loud noise exposur. 5 years after the T : disappear)

The truth is we don't know lots of things about tinnitus.
Lot's of things are thruth. One day we will die. People suffers from many reasons throught the world.

Why does people continue to live when we know that? Because human is on earth to hope. Not to be aa pragmatic piece of living meat who have a brain to suffer.

This forum provid dsupport to T sufferers. When i read it i feel better. And i know that feeling better is the key against tinnitus.

So for me, "truth" with tinnitus, is relative. Hope of improving is the key!! And maybe this hope can bet "thruth"!!

 

Boxdra
I totally understand (and agree); support (real support) calls for wisdom and discernment. However, I see a logical issue with this point of view; incorrect premise.

If I'm understanding correctly (and correct me if I'm not) the very basis of the argument goes something like this

truth = negative
untruth/half truth/skewed truth = positive
furthermore
positivism (optimistic thinking) > truth

None of this is true and is actually debilitating. There are times when the truth is positive and times when its negative and no amount of optimistic thinking is ever greater than the truth.

Psychological health mandates the ability to accept the whole truth and remain emotionally viable.

That's not to recognize there aren't truths that can simply crush the spirit; and it is, after all, that spirit we are seeking to make viable.

Therefore, I'm not saying we should go around hitting everyone upside the head with hard-cold truth all the time; it's ok to emphasize less harsh and even positive/optimistic truths depending on their emotional state. Offer hope when needed. Furthermore, it takes wisdom, compassion and discernment to know which truths to tell someone at which time.

T SUCKS!! That's the truth; but it is equally true (and highly probable) to get your mind/emotions around the whole issue and settle with it -- and get back to your old self again. Hard truth with a positive outlook (real hope).

It certainly doesn't mean I didn't go through the worst time of my life last year (I questioned everything about myself and life and was totally miserable); and I will admit there were certain truths I wasn't able to handle at certain times. But I eventually came to the conclusion that I had to accept the whole truth and get myself wrapped around it and on top of it.

That was one of the hard truths I needed to hear (you have to accept your situation) -- it hurt, but in the long run it helped (gave me a way ahead, a goal, a task to work on) -- taking healthy steps is positive.

Do I ever want to go through anything that traumatic again? NEVER!! But if I were, I would work toward learning the entire truth (warts and all) and work on accepting it.

It's the classic 'truth in love' concept -- total truth (with hope) delivered with compassion.

I know that doesn't make things easier; it's just a road map I've followed.

If I am 'hitting you upside the head with truth' it certainly is not my intention; all this has been said with a kind heart and best intentions.

Prayers!

Mark

 

I have had T for two years ...I still have no clue about the "thruths" involved ?
What is true ? That it gets better ? That it gets worse ? No clue ?
When I have no clue I might as well be positive and supportive.
Also , I might as well be honest ..being honest can involve being slightly negative at times.

I have no clue.

 

I agree with @RaZaH

Very little certitude exists with tinnitus.

Researchers offer different hypotheses on how tinnitus becomes centralized and how the brain maintains the precept, even in the absence of input from the auditory nerve.

How people experience tinnitus also differs. Some people hear loud sounds and are not bothered by them; others hear much lower sounds and it causes much distress.

Most people habituate to their tinnitus--whether it is loud or soft. But habituation times vary from six months to several years. No one knows why.

What role does the limbic system play in tinnitus generation and maintenance? What about depression and anxiety? Does tinnitus cause these complicating mental health problems, or are people with these tendencies more likely to get tinnitus?

What is known for certain is that everyone with tinnitus should protect their hearing. And tinnitus may get worse over time. But not for everyone. Maybe not for most people.

We also know that certain drugs and chemotherapies are ototoxic and are likely to worsen existing tinnitus.

So is it okay to tell the truth? Absolutely. Just remember that very little is for certain and most people with tinnitus habituate and live normal, happy lives.

One day, we will all be fully habituated and/or cured.

I believe this is the truth.

 

The last two posts sum up what I was thinking here.

There is no truth at this point in time, just a lot of possibilities.

Some suffer, some don't. Some will get better, some will get worse. Some are helped by a particular treatment, some are not.

Should we present those possibilities by telling people there are plenty of opportunities they will get better or by saying there are plenty of opportunities they will get worse?

You will never get better if you seek negatives, you deny any hope and doom yourself to wallow in bitterness and self pity. This is a psychological condition as much as it is a neurological / chemical / physical one.

In my opinion what we do here, trying to link others to information and give them support, is part of the process of overcoming this. We turn this horrible condition around and use it as a positive to help people.

Remember also that we have a disproportionate collection of chronic sufferers on this forum; large amounts of people cope with tinnitus perfectly well and feel no need to seek support. Plenty of people leave here after a few months because they get better.

In this regard the truth is that there is a very high chance people will overcome it and go back to living a full life.

 

Hi Jazz, I really like your attitude and words.
In particular how you see habituation time, anxiety and depression.
I have a high-pitched T that cuts through everything. Horrible.
I fear that habituation will take somewhat longer. I am 9 months in and still difficult for me going through my day.
I was never depressed or had anxiety before. Now I am full with both.
The really bad thing is that no one knows if you will habituate at all and when.
And how much you will loose on the road there (job, friends, family).
Reading success stories every day keep me staying positive.

 

Nice to see all the replies. First off, I did not meant to make a distinction between the truth and being positive. Like I said, sometimes its both. But, the goal is different. With one you try to change the emotional State, with the other you try to give an objective picture of what we know. Both should be used in the end.

A lot of people think that saying that 'it will likely go away' will help the person. But, in fact, we don't know. So then we are giving people false hope. The right answere should be: I don't know if its going away. Giving people false hope will not be helpfull.

The truth does not mean you have to 'know it all'. Saying you don't know can also be the truth.

I like your post Jazz. But, in the end you make exactly the mistake I was talking about. First your saying we don't know. Then your saying: 'in the end we will all be habituated and/or cured.' How do you know this? We cant. Its nice that you have a positive attitude, but tis not something you can say its the truth. Maybe there won't be a cure. I know people who did not habituated. So your statement is fals. And if people really expect this to be the truth, people can be given false hope. Be aware: om not saying we should not hope, i'm saying our hoped and dreams should not be presented as the truth