Tinnitus Is Not Tinnitus...

Tinnitus is not Tinnitus.

It is not “much of a muchness.”

Most ‘sufferers’ have it mildly.
I did, for over twenty years.
A veritable ‘stroll in the park.’
I rarely ever mentioned it.
I didn’t need to.
It was insignificant.
I lived my life to the full.
I cruised the world playing jazz,
(But you’ve heard all that crap before, right.)

However, there came a fateful day when that all changed - when a massive acoustic trauma took my quality of hearing and my quality of life.

I do not mention this because I want anybody’s sympathy.
Sympathy is of no use to me.
I am simply not interested in @TuxedoCat ’s sneering suggestion of
‘commiserate with Jazzer.’
Poke your disingenuous sympathy misus!

Sympathy - No.
But Understanding - Yes.

Mild “T” and severe “T” are two completely different animals.

I am writing this piece because one would have thought it should be obvious by now that these two ‘barely related’ conditions should not be viewed as the same complaint.
They are not - in fact, they are almost totally dissimilar.

The first, barely crosses your mind,
the second, never ever leaves your mind.

For this very reason severe sufferers do not particularly appreciate being preached at by the self-satisfied
“I did it, and you can do it too”
mild ‘airy-fairy’ Agony Aunt brigade.

Neither do we particularly enjoy seeing our hateful condition being misrepresented by those who portray it merely as some kind of a mild nuisance.

After the incident, which shall forever be remembered on this forum as “Reid-gate,” many members were incensed by the annoyance of those of us who felt a tad misrepresented.

A sort of:
“How Dare They?
Let’s hold a witch-hunt!
Track them down and flame them where they stand !” - mentality.

Did you perpetrators really think that us decent suffering people, who you have known for yonks, and are known to be kind people, had suddenly turned into hateful monsters?
Really ??
Don’t you know us better than that ???

Yes - the interview did raise awareness, I would not argue against that, but it did not show anything of the severe sufferers plight.
That is all I am saying.
Hence - frustration.

I am not wishing to foment another endless argument, though it probably will instigate another
“Night of the Long Knives;”

I am trying to explain a situation that occurs very often on here, due to a disparity in the severity.
I am asking you to try to understand, but if you insist on failing to understand anything that I have been calmly trying to explain, then you all know where I live - so just send the posse round and enjoy your lynching party.

If possible, I’d like a cheese-burger before I’m dispatched
....dash of ketchup would be nice,
.....bit of salad garnish perhaps....
.....but I don’t want to push it......x
(.....er.....no mustard....)

 

@Jazzer

I am an admirer of good writing and you have put your points across poignantly and straight from the heart. Above all everything that you have said is the truth.

Take care
Michael

 

Hi Michael
Thank you for your support.
Rather like you;
even though I am a severe sufferer, I have attempted countless times to councel many members, sometimes hour after hour, day after day, and for months at a time, to help them come through this wretched dilemma, to hopefully reach some ‘safe ground.’
Anybody that does not believe me can go and check with the management!
Should people of our worth accept demonisation by those determined not to understand us?
I think not.

Well done for all that you do.
Let’s both pat each other on the back.
Dave x
Jazzer

 

Lot of members here are clueless to the fact, that there is a HUGE leap from mild to moderate Tinnitus.
Similarly, there is about the same amount of leap between moderate and severe level.
No point of talking about catastrophic level, as that one most people can't survive for any sustained period of time.

Having been at the severe level myself for about the 3 longest months of my life, it felt like seeing something so horrible, that cannot EVER be unseen...
It was a glimpse of a parallel dark world, that I didn'know existed.
A world devoid of any enjoyment, filled with the most brutal form of CIA style torture that is beyond description with words...you can literally feel getting closer to the dark wet grave by each second of each minute that passes by....this is made more disturbing by the fact, that lot of sufferers such as myself were normal, happy well adjusted individuals, whom never experienced anxiety, nor ever had a suicidal thought cross their mind.
This can all change withing couple of days...literally.

Nothing fires me up more than the "happines is a choice" or "it's all in your head" types of posts...
It is quite literally equivalent to a waving a red flag infront of a bull...we all just recently read a post about a "leading ENT", who claimed that tinnitus will max out at 20 decibels and it's really nothing but a minor annoyance.
My patience with these types of opinions is getting very thin and if I see something like that, I will attack it with extreme prejudice because those types of posts are an insult to those who truly suffer.
What I'm saying is that I have your back Jazzer...and others in that boat.

 

I am exactly like this. My T has come down to mild levels most of the time. Even though the sound itself scares me even when quiet.
I have 4 little kids and also think about T all day long on many days even if I don't want to. I constantly tell them to be quiet although my H has also come down to manageable levels. I am 38 and have anxiety issues. I want to be the dad the kids deserve.

 

You deserve to be able to live your life free of this nasty disability @TLion We all do!

There is no ‘cosy’ level of T. Although living day to day with loud shrieking T is a miserable existence. As @Wolfears has often pointed out and you guys are confirming. Until there is an effective treatment even if you have it mild you still have to live with the inevitable fear of having a ticking bomb strapped to your chest at all times, never knowing when it’s going to go off and cause total carnage.

Nobody should be made to live like this, as a prisoner to this bullshit for the rest of their lives.

 

JAZZER! Unfortunately, communicating by written word as we do, leaves out the non-verbal part of communication like tone of voice and body language. I wasn't sneering when I made reference to you and I certainly do not pity you. That would imply I am in a better state than you, which is hardly the case. Plus, you can tell it like it is and stand up for yourself, you are not someone that is to be pitied. At the same time, your feelings run deep, are complex and expressed in wonderful ways: cartoon corner, agnostics are us, trojan horse, tinnitus is not tinnitus, the list goes on and on.

When I wrote "commiserate" I intended it to mean someone would find in you, a fellow sufferer, the ability to share feelings about this horrid condition in a way only someone else with the condition could understand. Personally, I'm not convinced that anyone without tinnitus can or ever will be able to truly understand what its like to have it. The commiserating, sympathizing and/or empathizing that goes on here at TT is among sufferers which puts it on a different level than what would exist when someone without the condition engages one with it. If someone with tinnitus were to say to me, "I sympathize with you" , I would truly believe they do. On the other hand, if someone without tinnitus were to say that to me, I would say/think (might even sneer) "no you don't, because you cannot truly understand what this is like, so save your sympathy for someone else."

I've never experienced tinnitus at an intensity where I could ignore it. I don't have to listen for it, its there all the time. It's caused me to slip into a state of apathy, to loose weight to the point of only being a shadow of my former self and to become reclusive. Now, I am actively trying to pull myself out of that state and learn what its like to live a life with tinnitus.

I'm trying to keep a safe distance from threads about people like Susana Reid because I am a skeptic. The audiologist that first helped me said she had tinnitus and then at a subsequent appointment admitted she did not have it. I'll say no more, I believe that fellow sufferers will understand how what that felt like.

In hind site, empathize would have probably been the better word, but I am somewhat redeemed by the fact that it is are part of the meaning of commiserate. If there is an upside to this misunderstanding, it is that you have been able to re-visit the topic of the different intensities of tinnitus and the message that those with intense forms need to be represented. For that, I applaud you!

TC


com·mis·er·ate
/kəˈmizəˌrāt/
verb

1. express or feel sympathy or pity; sympathize.
   "she went over to commiserate with Rose on her unfortunate circumstances"
   synonyms: offer sympathy to, be sympathetic to, offer condolences to, condole with, sympathize with, empathize with, feel pity for, feel sorry for, feel for;
   comfort, console
   "the pastor sat down and commiserated with them after Lester's funeral

sym·pa·thy
/ˈsimpəTHē/
noun

1. feelings of pity and sorrow for someone else's misfortune.
   "they had great sympathy for the flood victims"
   synonyms: compassion, caring, concern, solicitude, empathy;
2. understanding between people; common feeling.
   "the special sympathy between the two boys was obvious to all"
   synonyms: rapport, fellow feeling, affinity, empathy, harmony, accord, compatibility;
   fellowship, camaraderie
   "sympathy with a fellow journalist"

em·pa·thize
/ˈempəˌTHīz/
verb

1. understand and share the feelings of another.
   "counselors need to be able to empathize with people"
   synonyms: identify with, sympathize with, be in sympathy with, understand, share the feelings of, be in tune with;
   be on the same wavelength as, talk the same language as;
   relate to, feel for, have insight into;
   informalput oneself in someone else's shoes
   "John could empathize with the survivors"

 

Mild or Severe Tinnitus, no one deserves this torture. This is pure hell, this for me can never be a walk in the park. No one wants to get tinnitus louder than they have it, freaking scary. What I have bothered me enough. Hope we all get help soon. Stay strong, not easy.

 

@Bam
I have already covered the debate about the severity of tinnitus and don't wish to go over it again. However, It seems there is still some misunderstanding on this issue. Whether the tinnitus is: mild, moderate, severe or very severe it doesn't really matter because it all means the same thing. What is important and absolutely crucial, is how it affects one's "mental and emotional state of mind". Some people have mild or moderate tinnitus and yet they affected in exactly the same way as someone that will have it loud and intrusive 24/7.

Picking up on @Jazzer and his comments about the Reid-gate affair. He, I and a few others know exactly what's going on here regarding this particular person, whom is quite well known in the UK . Being a celebrity is not enough for some people, they need their ego's constantly massaged to boost their self esteem. The lure of having thousands of people commenting and "following" you is almost too good to pass up.

Counselling someone with tinnitus @Jazzer is not easy especially when your own is intrusive and debilitating. I have done it for a number of years by email, forum and telephone. I was unable to do any counselling for 3 years when I was going through a very difficult time with my tinnitus. Try not to worry over this too much. Hopefully with time, your tinnitus will improve and if you find yourself able to help people I'm sure you will be very good at counselling.

All the best
Michael

 

Tuxedo - I truly appreciate you coming back.
I did leave it a couple of days to see if you would, hence the (somewhat sharp) prompt.

Subsequent to the “Reid-gate incident,” I did have the feeling that there was a witch-hunt in full swing against those that did not necessarily accept the ‘party line.’

Along with most witch-hunts there frequently goes the “Dash for the Moral Highground.”

The rest of us did have a valid point in my opinion that was trounced, so this morning I decided to attempt to redress the issue, or at least explain myself a little better.

Thank you TC for your understanding, and your appreciation of a quite delicate matter.

Very best wishes
- you know what - you’re okay. xx

Dave x
Jazzer

 

@Jazzer, reading your post was like having my own thoughts read to me. I started to quote favorite parts but mostly the whole thing. It's so personal I don't find it worth talking about. But if I did, copy and paste what you said and it would express my own thoughts on the matter. But why bother, (glad you did).

I share with you knowing this animal. Thanks for posting, makes it less lonely.

 

Hi Dave, you know I respect you so I don’t want to start an unnecessary argument.

My thoughts on that thread were this:

Someone spoke out about their tinnitus and there were some derogatory remarks made towards her for no good reason. Everyone has the right to talk about how they feel without the need of approval from anybody. No-one should be censored.

I advocate that everyone has the right to speak out, and there shouldn’t be any clauses. She did not demean the condition because she only spoke about her own personal experience. If someone saw the news that day and thought “what the hell’s tinnitus”, and then googled it, they would have the opportunity to see the full spectrum, and how catastrophic it can be. In fact, some suicide stories may have even popped up. Essentially, this will have raised awareness. If some have gone from not knowning a thing about tinnitus, to looking it up and reading about it, then they have been educated for the better.

I would equally stick up for someone with obvious, severe tinnitus, if the roles were reversed. Imagine if you tweeted about your situation and you got called an “attention seeker” by the tinnitus community. I think the lack of one voice, and unity, works against us.

If we can’t support each other then what are we all doing on this site? I will support severe and mild sufferers, equally. The key word for me is “suffering”.

I believe if people didn’t step in, it would have turned into a witch-hunt against Susanna. The thread was about raising awareness at the end of the day; not discussing how loud her T is.

There was an excellent opportunity for people to reply to her tweet using a video message, or just plain text, to extend the awareness further by showing the world how bad it can get. This would have opened up a more detailed discussion on the topic. Instead, the community did what it always does: it capitulated.

Anyway, that’s how I saw things go down, but there’s no hard, personal, feelings by any measure. I just speak my mind like you do, which I respect.

 

@Wolfears, hello brother.

 

Exactly as it should be Ed.
Best wishes buddy,

Dave x
Jazzer

 

I’m well aware of this fact as it completely changed the course of my life. What I don’t understand is what other people’s tinnitus has to do with Susanna’s? Does she not have the right to tweet about her’s?

I would never dream of censoring another sufferer just because theirs is not as loud as mine. It’s almost like a reverse form of schadenfreude.

 

Hello my friend...wish we could meet in a place where there's no darkness, but this is the reality.

 

What interview? A tweet on Twitter is not an interview. She posted a tweet. One tweet that created a conversation where others shared their experiences, many that absolutely showed the plight of severe sufferers. What if that was part of her intention?

I am beginning to suspect that unfamiliarity with social media platforms is part of the misunderstanding. An interview and a tweet are two entirely different things.

All that said if emotional distress is the only severity measure, it seems her tinnitus was severe enough that day to cause her to vocalize her frustration. Should our members with mild tinnitus not post when they are enduring a spike or upset?

And in an article, not a tweet, she talks about her distress when she got tinnitus following her child’s delivery. She was diagnosed with tinnitus. Clearly it caused her enough concern to seek medical input. In another outlet she was asked about something she lost that she would like back. Her response? Silence.

Isn’t that something we would like too? I’m unsure why she is less worthy of support because she is currently emotionally coping with her tinnitus. We have many members here coping with tinnitus, too.

 

Yes, it's a powerful reality. The experience with darkness caused by tinnitus is a big reason I search for the light (so some good has come from it). Like Jazzer's, thank you for your post. It helps knowing there are others with similar experience (in the same boat).

 

The comments that were made against Mrs Reid were low brow and bordering on sexist, don't be surprised if you got a lashing for it.

She tweeted about her tinnitus, it raised awareness about her condition... She did much more for the tinnitus community with that one post than you did with all the hateful remarks against her.

The thread in question: https://www.tinnitustalk.com/threads/susanna-reid-—-uk-tv-presenter-talks-about-her-tinnitus.32005/

 

Yes, exactly. This is why those of us with mild tinnitus have such big anxiety problems. Just living your life seems a guarantee your T will increase. Most of our severe sufferers started with mild T and got worse. It feels like an inevitability that we will also become severe. We have to be 'grateful' for what we have. In our desperation is the only choice to become hermits to avoid loud T? Is the only way to become anti-medicine, anti-people, anti-dentist shut-ins?

I think a severe T sufferer will encourage us to do anything we can to prevent our T from increasing. When you think about it, we have so many things to dodge. We have to always be alert, aware, and educated. And any mistake can lead to severe T.

It's very, very stressful.
Many here say that's nonsense. We just need to cure our anxiety. How?? If you have tinnitus, you are more susceptible to further damage. The amount of posters on this website reporting worsenings is insane!

 

...

 

I’m going to stick my neck out here and suggest that there was zero malice intended in ‘Reidgate’ and all of us including @Jazzer fully understood the whole awareness thing.

But how long is it going to take for one of my family or friends to bring her up in conversation and tell me how well she copes. Like they do with Chris Martin and with Will I am. With the direct implication what’s wrong with you?!?.....You whiny pathetic loser who can’t handle a little noise in your ears.

I’ve never mentioned this here but I no longer speak to my mother- who was like my best friend. This is because of all her neighbours with very mild or fleeting T telling her its no big deal and laughing at my complete meltdown and her consequently accusing me of being ‘gay’. Her words not mine.

So some of you need to understand that people with mild T talking about like it’s a total breeze may raise awareness but they can also bury some of us completely and take away all our support.

Because our friends and family -unlike us- simply can not comprehend that T has various levels. So my T is immediately lumped with all the celebrity T whether I like it or not.

Consequently I now suffer exactly the same condition as Susanna Reid in the eyes and minds of my family and friends. And she is just less ‘depressed’ than me. And far tougher.

So she may have raised ‘awareness’ but through no fault of her own she’s made my situation far worse.....Not her fault. I forgive her!

But what I really need and other people like @vermillion and @Manny and @valeri and the list goes on and on who really suffer badly - and you can all hate on me for saying this - is a ‘celebrity’ suffering from really severe T who openly exposes some of the really dark aspects of this condition as we do...... Suicidal thoughts, daily torture, desperation, total loss of joy, utter pointlessness.

Nobody is nasty or wishes this upon someone out of personal spite or viciousness. It’s just our desire to have what ‘we suffer’ accurately reflected so we stop hearing a load of insulting crap off people.

As much as I wouldn’t wish this at all and I’m not remotely nasty. Hearing someone say, ‘Tinnitus, that f***ing killed Susanna Reid’ would make our plight somewhat less frustrating than ‘oh yeah my neighbour has that and it doesn’t bother her at all. You must be gay!’

 

So! only gay people can’t cope with severe T? It’s homophobic and sheer nastiness to tell you that. Walk a while in your shoes and then see if the view changes in how courageous you are in getting through every day.
Eve xx
@Bam

 

It's also possible some of these people could have really bad T, but because they have a different mind space, are better equipped to deal with it. Limitations around human empathy and intelligence almost always seem to revolve around a 'one size fits all' approach.

People act like they care about suicide prevention yet even just the smallest of actions, understanding we aren't all the same and all have different weaknesses, shows that our society is actually very callous towards people who are suicidal.

 

Dear @Bam

It must have been very difficult for you to write your post and I feel for you deeply. I am also very sorry to know that you no longer speak to your mother over the issue of tinnitus and hope that the rift between you will soon be healed. I wish my late mother was still around for she was my confidant and the only person I could trust, although I must say, I could also trust my late father implicitly.

Reading your post brought back some painful memories for me of when I was at secondary school here in the UK at approximately 13 years of age. I had to have an eye examination that first required me to have liquid drops put into my eyes to open up the pupils. I forget the name of this test. My mother and I were told by the Ophthalmologist, I would have blurred vision for no more than a couple of days. This wasn't the case for me, for I was unable to see clearly for 10 days. Reading was an absolute nightmare as the words on a page were a complete blur. When I was asked to stand up and read from a book in class by my English teacher, I explained that I couldn't see clearly. Right there in front of all my classmates he said: "I think you're skiving".

I explained to my mother what happened and instead of getting some understanding and support as I thought, she agreed with my English teacher saying: her friends children had the same eye test and within a day or two their vision returned perfectly. Years later whenever I brought up the incident my mother would apologise profusely for not believing me.

I hope the differences between you are your mother can be reconciled for life is just too short.

Take care
Michael

 

I have to agree with @Bam all the way.
A televised item on a celebrity talking about her patently mild Tinnitus does nothing to highlight the extent of the suffering that this thing does inflict.
It simply reinforces the general public’s view that this is a mild copeable complaint, and therefore not worthy of researching, much less donating to.

This also raises the possibility that the true danger of this condition will be understated, so that the appropriate deterrent effect on erstwhile healthy people will be diluted, and largely ignored.

The difference in coping and not coping, is all about intensity, not courage.

It is the ridiculous perception that this wretched thing is easily cope-able, that leads to drivel about choosing happiness (as opposed to suicide), enjoying the sunshine (as a treatment method) and other clueless platitudes.

Just my views, as always.

 

Let me make sure I understand: other people coping with tinnitus makes people who personally know you unable to empathize with your pain. Not only unable to understand but to make homophobic statements.

That is absolutely awful, but the problem lies with your mother. Ms. Reid coping with her tinnitus did not make your mother homophobic nor lack compassion for her own child.

Your mother’s lack of empathy is far more concerning than Ms. Reid posting on Twitter that she was struggling with her tinnitus. If anything, that tweet should illustrate that tinnitus can be a struggle even for “celebrities” that seem to have it all. And the tweets it inspired from others should help illustrate the wide spectrum of emotional responses and distress caused by tinnitus.

Lack of empathy seems to be our greatest problem in raising awareness, raising funding, etc. Yet it’s ironic that when someone tweets that they are struggling, we fail to show them empathy and instead complain that they should not speak up.

 

What news item are you referring to? Ms. Reid’s tweet on Twitter? Or are you referencing a hypothetical news feature with a hypothetical female celebrity?

And to clarify, do you weigh tinnitus severity based on volume alone? You mentioned intensity and we seem to have a mix on TT of members with severe volume yet a mild response and mild volume yet a severe response.

 

I like to share something with all of you. I am reading TONS of posts like this by the OP, first the trojan horse, this one and quite few other ones. I will be very blunt with all of you. These types of posts do not lead to healing. Re-living your agony and keep saying it in multiple posts will NOT lead to healing.

You are basically feeding your mind/soul the misery that tinnitus can bring on. Yes, tinnitus is a horrible ordeal and no one knows it better than myself. 30+ years of this is quite a long time and I have been through all the roller coaster rides that all of you are riding right now. You feed your mind misery, it will arise more in life. You feed it strength, you can become strong.

I truly understand that this board is filled with MANY that suffer from this dreadful condition. It's not a disease but a condition that has affected many of our lives. It's ok to gripe, vent and ask for support because of your tinnitus. If you want to experience healing (healing can happen when we habituate/cope/move forward AND MOVE ON) then I suggest that you focus on posts that can add value to your life. threads such as this one provides little value if any.

I highly suggest that if folks are troubled by tinnitus, then go and speak to a counselor and talk face to face. This board is a godsend but it does not compare to talking to an actual person. NO, meds are not always necessary. NO, the therapist DOES NOT need to have tinnitus to understand or care. They simply need to be a caring therapist that CARES about you. I do this myself, not because of the tinnitus because of the grief of losing parents.

If you folks truly want to get better and live your lives, then avoid the constant negativity. Avoid taking time to re-live your misery that tinnitus can bring. I have done it myself and I did it for many years and in the end it only held me back. You can either read and listen to what I say or just keep on and reap these negative threads. These negative habits will become you more and more. Instead try to find solutions to coping, build a better support system, this is much better than flocking to negative posts and let them sink into your minds...

I suffer from intrusive tinnitus with no support each day and I still live a good life. The choice is all yours, I have made mine and I am very glad to not let tinnitus get the best of me.

 

Please don't confuse Tinnitus shamers with Mild tinnitus sufferers, it seems like most of these attacks are directed at people who are least deserving of them. Remember who it is you are having issues with, and don't harbor resentment at those who are in the same camp with you.