Tinnitus Sufferers at Risk of Isolation Say Charities | 5 News

[Agatha]

 

[Ed209]

@David, some of the BTA posts during Tinnitus Week so far have been right on the mark, in my opinion. The Channel 5 News broadcast was also just what was needed.

Keep up the good work.

 

[TheDanishGirl]

Sorry, but I think this is another sugar coated article, where they choose to highlight the milder case. The woman in this video says she WAS suicidal, that she FELT like she would never have peace again, etc... She talks in past tense and that therapy helped her cope with it. If I was a non tinnitus sufferer or a very mild sufferer I wouldn't lift a finger to contribute to research after seeing that video. She got better with therapy... Why should I help to bring forth a cure for something that people get used to?

How about highlighting the cases where a person IS still suicidal, still FEELS like they will never have peace again, did NOT get better with therapy. These are the people we should be highlighting if we want any hope of a future cure.

An article like this just works counter productive on me. I feel even more lonely and isolated. It is like nobody gets me or other severe (not talking only loudness here, because mine is not super loud) tinnitus sufferers. We seem invisible to those, that are actually supposed to represent our case.

 

[Ed209]

Sorry, but I think this is another sugar coated article, where they choose to highlight the milder case. The woman in this video says she WAS suicidal, that she FELT like she would never have peace again, etc... She talks in past tense and that therapy helped her cope with it. If I was a non tinnitus sufferer or a very mild sufferer I wouldn't lift a finger to contribute to research after seeing that video. She got better with therapy... Why should I help to bring forth a cure for something that people get used to?

How about highlighting the cases where a person IS still suicidal, still FEELS like they will never have peace again, did NOT get better with therapy. These are the people we should be highlighting if we want any hope of a future cure.

An article like this just works counter productive on me. I feel even more lonely and isolated. It is like nobody gets me or other severe (not talking only loudness here, because mine is not super loud) tinnitus sufferers. We seem invisible to those, that are actually supposed to represent our case.

I was also very severely suicidal, but I'm not anymore. There's sugarcoating the facts and then there's outright hiding stories like ours. All sides of tinnitus need to be accounted for to keep a certain amount of integrity. The problem, as far as I can tell, is that none of the current most severe sufferers will speak up, so you can't really blame the BTA (or anyone else) for this. More people need to say something and many opportunities have been given including TV airtime. We can't criticise the ones who are prepared to come forward if nobody else is willing to do so.

The BTA recently posted another story about a woman who rang their phone line saying she was going to kill herself.

 

[TheDanishGirl]

I was also very severely suicidal, but I'm not anymore. There's sugarcoating the facts and then there's outright hiding stories like ours. All sides of tinnitus need to be accounted for to keep a certain amount of integrity. The problem, as far as I can tell, is that none of the current most severe sufferers will speak up, so you can't really blame the BTA (or anyone else) for this.

The BTA recently posted another story about a woman who rang their phone line saying she was going to kill herself.

I just think these milder cases are throwing the severe tinnitus sufferers under the bus. There is a way to both convey a message that YOU got better but that tinnitus is still VERY serious, can be life threatening in some cases, that nobody is safe and even milder cases can turn to permanently severe in a heartbeat and that contribution to research is therefore VITAL. I don't think this article manages to convey that message.

Do you have a link to that story of the woman who was called and was suicidal?

 

[Ed209]

I just think these milder cases are throwing the severe T sufferes under the bus. There is a way to both convey a message that YOU got better but that T is still VERY serious, can be life threatening in some cases, that nobody is safe and even milder cases can turn to permently severe in a heartbeat and that contribuation to research is therefore VITAL. I don't think this article manages to convey that message.

You could tell your story on the Tinnitus Talk Podcast and I will personally make sure it gets to as large an audience as possible.

Do you have a link to that story of the woman who was called and was suicidal?

Go on BTA's Facebook page and look at Helen's story.

 

[TheDanishGirl]

You could tell your story on the Tinnitus Talk Podcast and I will personally make sure it gets to as large an audience as possible.

A voice recording by myself? I'm sorry but I am far too anxious to do that.

But I would like to write it down, and then somebody else can read it on the podcast. Or publish it elsewhere.

 

[jay777]

All the eggs are thrown in the same basket.

 

[Ed209]

A voice recording by myself? I'm sorry but I am far too anxious to do that.

But I would like to write it down, and then somebody else can read it on the podcast. Or publish it elsewhere.

This is the problem, though. You can't criticise a sufferer for telling their story when you won't share yours. I understand your anxiety, but until people take these opportunities and say what they want to say, criticising the ones that do talk achieves nothing at all. I'm sorry to be blunt, but that's just how it is.

Everybody hides in the shadows here where nobody can see what they have to say. Maybe a podcast of some of the worst sufferers all interviewed together may help?

Who will come forward though?

 

[Fabrikat]

How about highlighting the cases where a person IS still suicidal, still FEELS like they will never have peace again, did NOT get better with therapy. These are the people we should be highlighting if we want any hope of a future cure.

I appreciate the BTA's efforts. I appreciate anyone's effort to publicise tinnitus suffering to the wider community. And I understand featuring individuals overcoming the challenge of tinnitus and moving on with their lives. Because most people do.

But why not for a change, feature a spouse or family member of a person who has taken their life or made an attempt to, as a result of this condition. Or a person who has lost their job or family due to tinnitus. People should be confronted with another reality not usually seen. The public would not believe it possible.

Some shock tactics would do far more for public awareness and be powerfully effective at highlighting the dangers of things such as volume to young people, than relatively happy ending stories such as the one on Channel 5.

My ENT has told me she has lost patients to suicide as a result of their inability to cope with their condition. Interview such a specialist. They're out there! They should be given the opportunity to speak and warn the public and even advise on countermeasures in otological emergencies. We only hear from people when it's too late.

Just as the medical fraternity have and continue to speak out constantly about the perils of smoking, it's time to encourage ENT's to speak in the same warning tones about hearing. I never see them on TV, ever. The BTA has the authority and capability of upping the ante in its quest for greater public awareness. It's an initiative that here on Tinnitus Talk, we could all get behind.

 

[jay777]

Maybe a podcast of some of the worst sufferers all interviewed together may help?

The forgotten tribe.

 

[Ed209]

But why not for a change, feature a spouse or family member of a person who has taken their life or made an attempt to, as a result of this condition. Or a person who has lost their job or family due to tinnitus. People should be confronted with another reality not usually seen. The public would not believe it possible.

I totally agree. This is all dependent on who you can get to appear on TV though.

 

[Ed209]

My ENT has told me she has lost patients to suicide as a result of their inability to cope with their condition. Interview such a specialist. They're out there! They should be given the opportunity to speak and warn the public and even advise on countermeasures in otological emergencies. We only hear from people when it's too late.

Could you give us the contact details of your ENT and we will do our best to interview her. These things can't happen unless people make it so!

 

[Fabrikat]

Could you give us the contact details of your ENT and we will do our best to interview her. These things can't happen unless people make it so!

Well if the BTA wants to interview doctors in Australia, then sure. I can but ask. Do they really have no one they could speak to amongst any of their associates in London? That's quite amazing!

 

[Ed209]

Well if the BTA wants to interview doctors in Australia, then sure. I can but ask. Do they really have no one they could speak to amongst any of their associates in London? That's quite amazing!

I'm not talking about the BTA, I'm talking about Tinnitus Talk. You just brought up a good opportunity, so if you give us her details we could potentially interview her if she agrees to it.

 

[Fabrikat]

I'm not talking about the BTA, I'm talking about Tinnitus Talk. You just brought up a good opportunity, so if you give us her details we could potentially interview her if she agrees to it.

What's the point of interviewing an ENT for Tinnitus Talk? That's preaching to the converted. There's a contributing ENT on Tinnitus Talk already. I'm talking about encouraging interested television outlets like Channel 5 exposing the public to medical voices.

 

[Ed209]

What's the point of interviewing an ENT for Tinnitus Talk? That's preaching to the converted. There's a contributing ENT on Tinnitus Talk already. I'm talking about encouraging interested television outlets like Channel 5 exposing the public to medical voices.

The podcast? As I stated earlier.

 

[Fabrikat]

The podcast? As I stated earlier.

We seem to be talking about two different things. I'm talking about asking the BTA to encourage mass media organisations such as Channel 5 to pursue perhaps the darker side of the tinnitus story rather than the 'happy endings' kind we mostly see. You're talking about podcasts to a limited and interest driven audience.

 

[Ed209]

We seem to be talking about two different things. I'm talking about asking the BTA to encourage mass media organisations such as Channel 5 to pursue perhaps the darker side of the tinnitus story rather than the 'happy endings' kind we mostly see. You're talking about podcasts to a limited and interest driven audience.

I'm offering a solution for this story to be heard. We are not the BTA so I fail to see how everyone's obsession with them here is helping to move the cause forward?

 

[Fabrikat]

The irony for me @Ed209, is that the people that counsel tinnitus sufferers that I've spoken to here in Australia, look to guess who for all their guidance and information?

The BTA!

They are regarded as the leaders and the forefront of all things tinnitus related. Out here in the colonies, whatever the BTA says is generally unquestioned and regarded as gospel and that's fine.

They are an authoritative advocate.

Maybe the reason people obsess about them on Tinnitus Talk is because they know the BTA read these threads and want them to show the dark side of the story too. I think for serious sufferers, it's more about feeling acknowledged to the wider public.

 

[Ed209]

The irony for me @Ed209, is that the people that counsel tinnitus sufferers that I've spoken to here in Australia, look to guess who for all their guidance and information?

The BTA!

They are regarded as the leaders and the forefront of all things tinnitus related. Out here in the colonies, whatever the BTA says is generally unquestioned and regarded as gospel and that's fine.

They are an authoritative advocate.

Maybe the reason people obsess about them on Tinnitus Talk is because they know the BTA read these threads and want them to show the dark side of the story too. I think for serious sufferers, it's more about feeling acknowledged to the wider public.

I understand this, but then you have to realise how difficult it is to find people who will say this on TV.

We all have a role to play.

 

[David]

Hi - this was a challenge to put together and get the story done. @Steve was lined up to be interviewed, as was I at one point, but both of us got dropped at the last minute, sadly. I thought Isobel did a great job conveying how serious tinnitus can be and is.

Remember this was a pre-record, there's a lot of material that doesn't make the edit (Nic answered 5 questions, only 1 answer got used) and you have no control over what does and doesn't get used.

But why not for a change, feature a spouse or family member of a person who has taken their life or made an attempt to, as a result of this condition.

We have done this in the past. I've been on radio previously with a family member of someone who took their own life. We based a campaign around this, in October 2017 from memory. We work with family members and friends in a number of ways both publically and privately to inform what we do.

My ENT has told me she has lost patients to suicide as a result of their inability to cope with their condition. Interview such a specialist. They're out there!

There's confidentiality and ethical considerations for a doctor going on record saying this. I've not seen this in press before but would be happy to be corrected. We do seek to work with people who convey the impact tinnitus can have, the need for a cure and better treatments - the channel didn't want a medic though, they wanted to speak to someone living with tinnitus. Also a medic won't go on to something like this as a BTA spokesperson, they will be representing their own hospital or place of work, so we have little control over what they say.

A voice recording by myself? I'm sorry but I am far too anxious to do that.

But I would like to write it down, and then somebody else can read it on the podcast. Or publish it elsewhere.

I'm talking about asking the BTA to encourage mass media organisations such as Channel 5 to pursue perhaps the darker side of the tinnitus story rather than the 'happy endings' kind we mostly see.

I think this is one of the challenges. Unfortunately news outlets aren't interested in hearing the story anonymously or second hand. They want to hear it first hand. Most people (and I understand and respect why) who are really struggling aren't in a place to do that - therefore representing the story like this is the way we can communicate how serious tinnitus can be and also meet the needs of the media.

Also be aware we are at the mercy of those who volunteer to be on the media to discuss tinnitus, are able to turn up to a studio at the drop of a hat and are happy confident and able to do this. Maybe we should value and support those that are brave enough to do it? I think if we do this it may enable others with harsher stories to tell. If all they see is criticism from this community, then maybe that stops other people from sharing their stories? If you watch/post on here and see others being criticised for going on TV, exposing yourself in this way, why would you volunteer to do so?

I understand this, but then you have to realise how difficult it is to find people who will say this on TV.

100%.

 

[Ed209]

There's confidentiality and ethical considerations for a doctor going on record saying this.

I'm sure this is ok as long as you are broadly speaking and not naming people and cases.

 

[david c]

Sorry, but I think this is another sugar coated article, where they choose to highlight the milder case. The woman in this video says she WAS suicidal, that she FELT like she would never have peace again, etc... She talks in past tense and that therapy helped her cope with it. If I was a non tinnitus sufferer or a very mild sufferer I wouldn't lift a finger to contribute to research after seeing that video. She got better with therapy... Why should I help to bring forth a cure for something that people get used to?

How about highlighting the cases where a person IS still suicidal, still FEELS like they will never have peace again, did NOT get better with therapy. These are the people we should be highlighting if we want any hope of a future cure.

An article like this just works counter productive on me. I feel even more lonely and isolated. It is like nobody gets me or other severe (not talking only loudness here, because mine is not super loud) tinnitus sufferers. We seem invisible to those, that are actually supposed to represent our case.

I agree with a lot of what you say about this. I think it is concerning the degree to which therapy is presented as a solution to the problem, when as we know in most cases it isn't. Also, I absolutely don't think there should be an implication that somehow you aren't "doing your bit" by not wishing to be filmed on camera or interviewed. We all know the pressures of social media these days and if you are already suffering from severe tinnitus that extra pressure and public exposure is something you can well do without.

 

[TuxedoCat]

Pretty Clever!

 

[Ed209]

I agree with a lot of what you say about this. I think it is concerning the degree to which therapy is presented as a solution to the problem, when as we know in most cases it isn't. Also, I absolutely don't think there should be an implication that somehow you aren't "doing your bit" by not wishing to be filmed on camera or interviewed. We all know the pressures of social media these days and if you are already suffering from severe tinnitus that extra pressure and public exposure is something you can well do without.

David, I can't figure you out. Where's your reply to my petition thread? Why can't you take positive actions to actually help; just for once? You hide behind a thousand cloaks of anonymity complaining about everything but never help with any solutions or positive actions.

I never suggested that TheDanishGirl be filmed; I said she could express her views via a podcast if she so wished. I respect her a lot as a person because she has contributed before, but I also had to point out that in order for the opinions that are being expressed here to be heard, we need people to speak out and actually say these things. This is a problem that's hard to solve, so rather than complaining, help out.

 

[TheDanishGirl]

I must say I get discouraged (and sad) when getting told that my contribution of writing a text, which you can put my name and age on, is not good enough. I am sure others feel the same way. If that is the attitude, then I (plus many others) simply can't help the cause. Put me in front of a camera or an audio recording device and I totally freeze and can't put a sentence together... This is actually really common feeling this way.

 

[Fabrikat]

@David,
It's helpful that you've clarified the intricacies and difficulties involved in trying to get a message out to the wider public. Clearly things are easier said than done.

Whilst Nic did well to tell her story, it's a shame that you and Steve didn't get to appear on the program and give your own perspectives. I know there's so much you both could've said, but are at the mercy of whims of producers and limitations of time.

The frustration, I guess, is that we hear the hard cases here on Tinnitus Talk, but the public often do not. Getting their stories told in a sensitive manner is the big challenge. People need to hear what a shitty condition tinnitus can be, that it's something they could fall prey to themselves and that it needs a greater funding, research and treatment focus.

 

[TheDanishGirl]

Hi - this was a challenge to put together and get the story done. @Steve was lined up to be interviewed, as was I at one point, but both of us got dropped at the last minute, sadly. I thought Isobel did a great job conveying how serious tinnitus can be and is.

Remember this was a pre-record, there's a lot of material that doesn't make the edit (Nic answered 5 questions, only 1 answer got used) and you have no control over what does and doesn't get used.


We have done this in the past. I've been on radio previously with a family member of someone who took their own life. We based a campaign around this, in October 2017 from memory. We work with family members and friends in a number of ways both publically and privately to inform what we do.


There's confidentiality and ethical considerations for a doctor going on record saying this. I've not seen this in press before but would be happy to be corrected. We do seek to work with people who convey the impact tinnitus can have, the need for a cure and better treatments - the channel didn't want a medic though, they wanted to speak to someone living with tinnitus. Also a medic won't go on to something like this as a BTA spokesperson, they will be representing their own hospital or place of work, so we have little control over what they say.



I think this is one of the challenges. Unfortunately news outlets aren't interested in hearing the story anonymously or second hand. They want to hear it first hand. Most people (and I understand and respect why) who are really struggling aren't in a place to do that - therefore representing the story like this is the way we can communicate how serious tinnitus can be and also meet the needs of the media.

Also be aware we are at the mercy of those who volunteer to be on the media to discuss tinnitus, are able to turn up to a studio at the drop of a hat and are happy confident and able to do this. Maybe we should value and support those that are brave enough to do it? I think if we do this it may enable others with harsher stories to tell. If all they see is criticism from this community, then maybe that stops other people from sharing their stories? If you watch/post on here and see others being criticised for going on TV, exposing yourself in this way, why would you volunteer to do so?


100%.

I just can not fanthom how you can really have that opinion. I watched the video again, and for me there is nothing too serious about her case. She got better. There is absolutely nothing signaling a cry for urgent help........it does not make me the slightest bit more enthusiastic in terms of donating to T research......If it can't shake me even a tiny bit, as an actual T sufferer, it will do nothing to those who don't even have it themselves.

 

[Markku]

I just cannot fathom how you can really have that opinion. I watched the video again, and for me there is nothing too serious about her case. She got better. There is absolutely nothing signaling a cry for urgent help... It does not make me the slightest bit more active in terms of donating to tinnitus research...

If it can't even shake me as an actual tinnitus sufferer, it will do nothing to those who don't even have it themselves.

I have to agree with that - it can give the impression that tinnitus is very tough to deal with for a period of time, but then with some sound therapy and counseling it becomes better.

While that might be the truth for the majority of those who get tinnitus, it's hard to understand how people who get airtime on national TV fail to recognize - and mention - the much longer term if not permanent impact tinnitus has on the minority (which is still loads of people in absolute numbers).

People have actually committed suicides because of this, people lose jobs, people lose families, people lose everything for this monster of a thing. Please, we need to prepare these people who get on TV via tinnitus organizations or PR agencies that it would be of great public benefit to look at the situation not ONLY from your own personal experience, but also that of others'.