Discussion in 'Awareness & Fundraising' started by Dubbyaman, May 5, 2015.
Separate names with a comma.
Love this guy...
Eddy Temple-Morris talks about Tinnitus (KCC Live)Watch this video on YouTube
Reasons why no one takes this condition seriously and even musicians don't really help to raise awareness, exhibit a:
(I don't want to start a discussion, perhaps I shouldn't post this but I can't deny it hurts when even other people with tinnitus don't understand that it can be debilitating. There are so many misconceptions as you all, of course, know from 'it can't get worse' to 'everyone can tune it out'. I should be used to posts like this but it just hurts.)
Resist, walk away, write and delete.
Autumnly you're top notch, super cool. Just forget it... Sometimes you have to just walk away...
Some people, medical professionals, fellow sufferers just don't get it... so f*ck em...
I understand how hurt you must feel reading posts that say one can tune out tinnitus and eventually it will cease to be a problem. I am an advocate of being positive as a means of enabling one to cope with tinnitus and to carry on with life. Unless one is able to do this, they can find themselves spiralling down into the vortex of negativity and there they dwell. Unfortunately this mindset can leave a person in constant misery being of no benefit to themselves or to anyone else and yet life carries on.
I am also a realist and know how debilitating tinnitus can be having habituated to it twice. Two years the first time and four years the second - so I have been there and suffered the enduring cacophony of noise night and day. Many times I was taken to the brink but managed to survive. My tinnitus can still be problematic and I take medication when necessary, but I'm still here and thankful for that. Please keep believing and never give up.
Dear @Autumnly and @Daniel Lion
- as you both know - I am absolutely with you on this.
The three of us have it severely, I know that for a fact.
As you both noticed the other day, I was vilified by two erstwhile friends for having the effrontery to point out to a ‘positive poster’ that
“it gets better and we can come to do more and more”
- does not apply to everybody.
My ‘friends’ pointed out to me that I have become aggressive, nasty, shitty, not the person I was, and so on.
I began identifying with Dr Jekyll & Mr Hyde.
Being a severe sufferer and speaking the truth is a dangerous occupation around here.
You will be criticised for being ‘negative’ the biggest insult in the tinnitus vocabulary;
people with a much lesser condition believe they have greater self control, courage, strength, ability etc...
Sometimes I think we should strike a medal for such incredibly brave souls.
However, I will continue speaking the truth - and don’t forget that the truth can only ever be a positive thing - and standing up for you guys, as you stand up for me.
PS - I don’t recall Me Hyde ever evoking ‘Love,’
Guys, I feel like this forum lately is getting more and more split into 'camps.' And it's not a good thing. We should be working together.
The severe sufferers are understandably frustrated. But I also hate to see people who don't fall into the severe category being made to feel unwelcome on this forum, as if it's somehow a competition as to who's suffering more. Tinnitus Talk is here for everyone who needs help or advice. And remember, the members of this forum all came online seeking help; you don't do that just for the fun of it.
It's been said before that tinnitus is a spectrum, and so it is. But does that mean only the suffering at the severe end of the scale matters? I would put myself somewhere in the middle of the spectrum, does that mean my suffering is meaningless? Do I only get to talk about my experiences, or do my opinions only matter, if my suffering is severe?
And remember, we also have many people around here who used to suffer severely for many years, to the point of being suicidal, and are now doing better. They often get told "well, you must not have had it severely then." Which is also incredibly hurtful and disrespectful to those people.
I don't believe that's true at all. I certainly don't think of myself as any better than anyone else. And I don't believe the people who "vilified" you - whom by the way are some of the kindest members around, and I worry might now have disappeared - would ever think of themselves as any better than others.
@Dubbyaman, @Autumnly, @Daniel Lion, @Michael Leigh, @Jazzer
Just tagging everyone who's been part of this thread so far. But really my message ended up here randomly, I'm of course talking about a general phenomenon, not this thread per se - which is actually one of the more civil threads I've seen recently. I will probably need to repeat this same message in other threads to hopefully get through to more people.
I just feel like what we're lacking on this forum these days is respect for the fact that everyone's experience is different. And we forget that we're all here for the same reason (well, most of us hopefully are): because we want to improve the lives of tinnitus patients. Do you think all this infighting is helping?
I think people are just frustrated and tired, and exhausted from trying to be heard and not being heard. I think the majority of sufferers who have it mild and are able to cope should be proud of themselves. So should the severe, but the reality is - even if tinnitus is on a spectrum - which it is with different ranges - the ones who tend to get their voices heard and stories told are the ones who are able to cope with it. The ones who are able to go through life, with just positivity and a head held high; they are the ones who get the spotlight turned on them. They are the ones who get shown on talk shows, to millions of people, who get to say and put out the all hailed sentence for this condition that: 'Tinnitus is able to be handled with, just protect your hearing and have a positive outlook', when that isn't the case.
Tinnitus is a game - one wrong path and your life can be infinitely worse if you don't have the knowledge necessary, or resources in mind to know to this. I wouldn't know about this site being divided by camps, as I am new here and don't know of the history that has been laid here, brick by brick. But if you're an ambassador for something, an advocate, it's NO LONGER just about you. You have willingly taken on the responsibility and weight of speaking for every possible sufferer who has to endure this. You have taken on this job, a hard and mighty one, to make sure your voice carries the tone of millions and that you're no longer speaking on just your experience, but everyone else's.
I don't know, maybe I see it differently. As a mild sufferer, it's heartbreaking, even for me, to constantly hear you'll get used to it - keep your chin up and walk the path, straight and narrow and all will be fine. I don't want to. I personally don't want to and refuse to. I want to be able to help the people who have lost their lives to this condition - who are home-bound and bed-ridden and can't even hear the bell-song of birds, or unable to hear the laughter of someone they love, because it causes pain or a spike. I think that should be the heart an ambassador and advocate carries.
Yes, we do speak for every possible sufferer. That's why we (Tinnitus Hub, the managing entity of Tinnitus Talk) do all the projects we do, promoting research, raising funds for a cure, creating videos of people's stories for awareness raising. All on a near zero budget and as volunteers. I will send you some links later of our work, too tired now.
My previous post however was referring to how we treat each other on the forum, not how we represent the community externally, that's a totally different story and in that regard I agree with you. They're just two different things.
To be honest, I kind of resent the implication that I would not understand this is not about me. I work for no payment for this organisation for 20-40 hours per week, so obviously it's not just about me.
I wasn't speaking on you guys whatsoever, you guys are amazing and I constantly see you guys stick your neck out and work yourselves hard. I'm very inspired by you and Markku! But my comment was more or less directed at Eddy Temple and other celebrities and such, who get even further opportunities than you and Markku to spread the word.
I assume this is unrelated to @Hazel's fantastic and insightful post above and just a general comment on how patients' voices should be represented? Or if it was aimed at Hazel, then I think you misunderstood her post. We have never downplayed the condition, never will, and it's of paramount importance to us that the severe spectrum is talked about.
Otherwise I assume we wouldn't be posting comments like this:
Oh sorry. I was being overly sensitive. My apologies, having a bad day
Never meant you or Hazel at all.
I'm sorry if I offended. I would never mean any of the hard workers on Tinnitus Talk. You guys work on so little, but still save so many lives...
Just to add my, purely personal, perspective here: For me, it was incredibly helpful, when I first got tinnitus and was in a state of total panic, to hear/read stories of people who had suffered a lot, but then habituated. I 100% believe I would not have been able to cope as well as I do today it it weren't for the Success Stories here on Tinnitus Talk, some of which are truly inspirational. Giving hope is important and can save at least some people from spiralling down uncontrollably.
Having said that, I totally agree that no one should be telling you how you should be feeling, that's just patronising. We each walk our own paths and have our own tinnitus journeys. That's more or less what I was trying to convey with my previous post, which actually had nothing to do with that celebrity guy, but it was more a reaction to a lot of the bickering, sometimes even venom, I've seen in many threads here recently. I just meant to say that lashing out at each other within the Tinnitus Talk community, and not respecting each other's different experiences, is not helpful to anyone and does not help the cause. Being frustrated or suffering is no excuse to lash out at others. Of course, I'm not refering to you though, I hope that's clear!
If any of my posts every made you feel like this, I truly apologize and will definitely change the way I talk about tinnitus! Of course, your story and opinions matter. The severity of your tinnitus doesn't decide how important your voice is. Everyone's experiences deserve to be shared and heard. They only become problematic, in my opinion, when they end in "I can do it, therefore you can do it!" But there are so many wonderful success stories on here that simply tell people's individual journeys. Mutual understanding is important, as long as we have that, it doesn't matter how severe our tinnitus or how well we can cope.
Completely agree with you here! I'd never dare to think or say something like this. If someone with severe tinnitus has gotten to a point where they can cope better, it deserves to be celebrated. Also, most members on here with severe tinnitus that say they can cope well nonetheless understand how debilitating tinnitus can be. Them being able to cope well, therefore, doesn't ignore the fact that tinnitus can be life-changing.
Personally, I feel like I encounter stories along the lines of "tinnitus is just a matter of having the right mindset" more than "if you can cope well, your tinnitus can't be that bad", especially outside of TinnitusTalk. However, I agree that the members Jazzer mentioned never struck me as people that thought they were above severe sufferers in any shape or form.
I hope my first post on this thread also made it clear that I was only talking about Eddy Morris! Especially my recent cooperation with @Hazel and @Markku has shown me how dedicated these two are when it comes to raising awareness. They absolutely understand that tinnitus is a spectrum. This discussion and another recent one, in particular, have shown me that these are definitely not the kind of discussions I want to cause and I'm sorry for creating infighting.
No, really it was just a misunderstanding and me being overly sensitive! Thanks for your kind words. We do our best
You have never made me feel that way! I agree, as long as people don't assume their personal experience applies to others, they should be able to talk about their experiences freely and be heard.
No need to apologise I guess it was just a sequence of events and threads that led me to this post, and it happened to be this thread that triggered me today, but there was nothing inherently wrong with your message. I'm just very wary of the infighting I've seen lately on the forum. But that's of course unrelated to how the condition is portrayed externally, which I understand is a legitimate concern!
An interesting contribution @Hazel.
For the purposes of the exercise, let’s just assume for one moment that I am the ‘fly in the ointment.’
Just call it intuition.
‘Split into camps.’
Even though we all suffer with tinnitus, of course we are divided in terms of severity.
Running such a diverse group is clearly not an easy thing to do.
Of course, I fully realise that this is not a competition for who has it the worst.
But I am going to tell you that there are some of us who have lost an entire way of life, a career, income, perhaps a wife, damn near everything.
For people like us to absorb the words of well-meaning members who regularly tell us that it gets better, and not to worry; just ditch the negativity and adopt a more positive attitude, is simply impossible to accept.
And then if we dare to mention that those words are quite simply wrong and offensive, we may be castigated for being nasty, aggressive and ‘shitty!’
Interestingly enough, there are a couple of members here who left the forum about a year or so ago, whom I regularly conversed with.
They seemed to be having a very tough time of it.
I was very worried about them, and several times enquired if they were doing okay, and would they please consider coming back, because I really missed them.
Eventually they did, and I told them how pleased I was to have them back.
That is how much I care - and yes - I do consider myself to be kind.
We must never close off the voice of those with ‘troublesome’ severity.
The answer is not to excommunicate them, or shut them down.
At this point I would like to remind you that I took the trouble to create a video recommending the good work of Tinnitus Talk, and asking for donations.
I didn’t see too many people doing this, by the way, but I did it.
It has so far had 1300 views in three months.
I recommended Tinnitus Talk because I believed in it. I still do.
Having lost my entire income, I can no longer donate myself - however my wife kept the donations going for me for the last six months.
She is also very busy doing her own charity work for children with cancer, even though we are both in our mid seventies.
I am so glad you brought this subject up.
It has given me the opportunity to stand up for the seriously afflicted once more.
Finally, if you consider my contributions to be nothing more than infighting, then I will seriously reconsider what degree of support I can continue to give.
Hopefully lessons can be learnt here.
@Jazzer, of course we appreciate your contributions. But as I've told you quite a few times now, you're free to represent the severe sufferers and hold any opinions you want, as long as you don't attack others merely for voicing their experiences and opinions. There's a difference between disagreeing and lashing out.
Just as you are free to talk about your negative experiences (and we will never stop you from doing that) others are free to talk about their experiences in any way they wish, without being attacked for it. This is a support forum, and there's room for all experiences and viewpoints. I think you should be - in fact, I know you are - able to express your opinions without lashing out at others. That is all we ask.
An example of ‘lashing out’ might be a good idea at this point @Hazel.
@Jazzer there are people like me who read but don't dare to post because of wanting to avoid confrontations with people like you. I saw you attack emmalee, jcb and martin69 who used to be your friends but who you threw to the wolves when they didn't meet your criteria for real suffering. It scares me how you talk to people whose tinnitus isn't bad enough or who haven't lost everything. I'm scared my tinnitus isn't severe enough to be accepted... can you be kind to me?
I think @Booger just answered your question for me. There are more examples like that. And some members have approached us in private about you as well, but I obviously can't disclose that here in public as it would be a violation of privacy.
There is very much a risk of people - from mild to severe - not feeling welcome and free to express their experiences, fears, and concerns freely when we start being adversarial and (at times) aggressive.
Okay you guys.
I guess I will always need to make my point, but will endeavour to be less ‘spikey.’
If there is a consensus of opinion then I have to accept it.
Honestly - I can be such an argumentative bastard at times - should have gone into politics.
(But not the diplomatic corps.)
When I first got tinnitus it was from ear syringing, April 21, 2010. I was in a bad place with what I considered severe tinnitus. I was one of the first to post on Tinnitus Talk and felt a real closeness to Markku. I didn't post for long due to computer problems. At year four, my tinnitus had dropped to moderate severe from severe. One day after that I decided to check Tinnitus Talk, but didn't sign in as I forgot my password. I would had said that I'm in a good place now.
Now I have very severe physical tinnitus and pulsatile tinnitus on top of regular tinnitus from injuries. I know what physically happened and what the causes are. I am in a world of hurt with physical pain. So for me, my two different experiences with tinnitus may be like a tale of two cities or maybe it's not.
I will never understand the human condition differences of body over mind versus mind over body. I had association with the two largest trauma hospitals in Northern California. My mother had pneumonia at age 82. A doctor in one of these hospitals told her that she must know that she could die. She recovered and lived another eleven years. Several years later this same doctor started to work in the other hospital where I had association. I heard her tell a patient that I would never tell them that they may not live. What is the moral of this story, I don't know.
Life is such,
Love to all. Everyone.
People have every right to tell their personal story as that is what a forum is for, especially a support forum. However, in recent times, there has been a shift towards ridiculing and lambasting anyone who doesn’t tell their story in a way that fits the paradigm of other individuals. I’m sorry, but some of the stuff I’ve read on here recently is not worthy of being written on a support forum. When the fault of a person is to try and lift someone else’s spirits, only to be met with a sharp tongue, then you know something has gone wrong.
What happened? We all know tinnitus wrecks lives and that’s why we do advocacy work; to try and get the word out there and to help the worst afflicted. I don’t see how dragging each other down on the support forum contributes towards that aim of helping others though.
Nobody is advocating that the worst sufferers should be censored. That would be beyond stupid and absurd, but there is a growing feeling that positive stories are no longer welcomed here and this is just wrong. Tinnitus is not a competition and I’m tired of reading comments like this one:
“people with a much lesser condition believe they have greater self control, courage, strength, ability etc...
Sometimes I think we should strike a medal for such incredibly brave souls.”
Who has any right to say that someone else has a much lesser condition? I’m sorry but this is so arrogant that I’m at a loss for words. This comment suggests - in my case - that my tinnitus is mild or inconsequential. I lost my entire way of life because of it, and it is clearly severe based on the descriptions that others provide. I changed my lifestyle, I adapted, and I managed to drag myself out of a very deep and dark hole. I’m sorry if this doesn’t fit the narrative on here anymore, but I’ve always said that people should be honest and tell their story as it is, warts and all.
Nobody has any right to tell others how to think and feel. Our stories are unique to us and you all have every right to tell yours without being unfairly criticised.
@Jazzer I am in the severe case group without change since 2002. We are all pretty much saying the same thing as you wrote below.
I remember way back in 2002 being stricken down in a single day losing everything I was working towards and finding a support board (way before Tinnitus Talk). It was the same back then when a new person with severe tinnitus posted some would say stop being negative and blah blah blah. That did not help me.
I had to learn with time. A lot of time on my own time and in my own way how to live with this condition. So now when I post I just try to say I understand and if asked will answer questions.
@Jazzer you are my soul buddy still. I don't think I have witnessed you being anything but supportive in your unique way. Sometimes others may read words differently and the message comes across differently. You are certainly not one I would ever be afraid of.
As written by Markku in the below post the severe cases like ours and like @Bam are not forgotten:
It takes a big person to say something like the above. Respect for that!
I don't want to lose the different perspectives on here; I know it can scare people who are newer to tinnitus and likely to recover or learn to live with it, but I want those with severe tinnitus to be represented too. I think we just need to resist the urge to shout each other down!
Thank you Star - I am relieved that somebody understands the point I was trying to make.
I did not set out to be nasty to my friends.
Why would I ever do that??
It is simply that when somebody generalises that this thing ‘gets better and better’ - I do know full well that for us severe sufferers with very loud noise - I absolutely KNOW that they are quite wrong.
When the damage is considerable it can not heal.
We all know the truth of that.
None more than the most severe cases of course.
Should I not be allowed to say that and tell the truth?
I took a severe ‘bollocking’ from the big guns, as you will have seen - and the cold shoulder from others.
I do not consider myself arrogant whatever anybody says to me.
I learnt from a desperate childhood, when I literally had nobody, to stand up for myself, and to believe in my self.
However - being human (surprise surprise) - I went back and re-read the entire thread, and still do not consider my words to be offensive.
However, I am not the adjudicator here, so I simply accept that which I feel is justifiable, and reject the rest.
In the words of the great child psychologist Ronald Winnicott - on observing the difference in two babies in his clinic - one of which was deeply lethargic and depressed, and the other ebullient and alive - he watched this healthy baby banging his spoon on his high chair with great gusto for some considerable time.
He put those actions into words, and decided that what the baby was in fact saying was:
“I Am I,
I Am I,
Look at Me,
I Am I!’
I will not apologise for who I am.
Best wishes Star,
and much love,
@Markku - great respect my friend,
and thanks to @Starthrower for the quote xx
I was once accused by a prominent member of posting something controversial (what me?)
and then posting a picture of some of my pussycats, by way of a charm offensive!
I mean - honestly - what a thing to suggest?
As if I would stoop so low ??