Susanna Reid — UK TV Presenter Talks About Her Tinnitus

[Ed209]

I was kind of standing up for her. All I went off in my earlier post was her own video describing her very mild tinnitus. If it's now really severe, as I said I applaud her. She's a tough cookie if she can keep doing what she does.

I understand, Bam. It's just the general tone whenever a post like this arises is always a negative scrutinising one. I don't get it. It shouldn't even matter what her tinnitus is like so long as she wants to talk about it.

 

[Ed209]

All I know Michael is that I have tinnitus that is very audible even in loud environments where you might struggle to hear someone talking. In a quiet studio with an earpiece in I literally would not be able to think for the screaming noise. Nor would it be remotely enjoyable.

Mine's the same, Bam. A cacophony of many noises layered together with a piercing dentist drill that fills my head. I can hear it 24/7.

The difference, after time, is that some of us lose the emotional attachment to it. This doesn't mean everybody will, or that you can just will it away. But I assure you that people do live and work with LOUD screaming tinnitus in their heads; especially those who are in the military, work construction, or are in the entertainment industry.

I'm not saying this to belittle anyone's suffering. The suffering is very real.

 

[Bam]

I understand, Bam. It's just the general tone whenever a post like this arises is always a negative scrutinising one. I don't get it. It shouldn't even matter what her tinnitus is like so long as she wants to talk about it.

Everyone's pissed off about their lives I guess. Sadly this condition makes even kind, tolerant people chippy and difficult. I don't need to tell you this.....you know.

Imagine the change in tone of Tinnitus Talk if a genuinely successful treatment was made available and celebs started posting about it and people finally got some hope and relief and tinnitus lost its terrifying edge a bit.

 

[Tinker Bell]

All I know Michael is that I have tinnitus that is very audible even in loud environments where you might struggle to hear someone talking. In a quite studio with an earpiece in i literally would not be able to think for the screaming noise. Nor would it be remotely enjoyable. And 'acting' fine would be exhausting and probably fail miserably.

I find even riding a motorbike with pro plugs a nauseating and claustrophobic experience due to the tinnitus being sealed in and screaming it's lungs out, drowning out everything else.

If Susanna has it this bad and can still do what she does, I doff my cap to her.

Mine is the same, too. It's a very high pitch noise that increases in volume to match my sound environment. I was once in a 90dB environment, and my tinnitus was still piercing above all noise. I obviously did not stay there long!

Earplugs are annoying because they essentially lock in the tinnitus and prevent you from hearing other sounds. I have the added challenge of my hearing loss doing that, too. It's not easy to hear beyond tinnitus when you cannot actually hear.

I am glad @fishbone was notified. He very clearly has severe tinnitus. Yet members on this thread have implied his tinnitus is mild because he lives his life, finds joy and spreads joy.

Really it comes down to how we measure tinnitus. Is emotional impact the only measure?

 

[GregCA]

So clearly, by the remarks on this forum "severity" is defined only by emotional impact. Good to know. That is how I feel about it as well. Volume doesn't matter. I'm glad we are all on the same page.

We're not: at least one person here doesn't think severity should be a measurement of emotional impact.

I'd prefer if the severity was an "as objective as possible" way to measure tinnitus, in order to be as similar as possible to all other conditions where severity correlates with intensity of a condition (asthma, urticaria, headache, cancer, pain, diarrhea, etc). Consistency is important as a way to ensure as little misunderstanding as possible.

The emotional impact is another dimension that is correlated with intensity/severity, but that needs its own degree of freedom as we know that all combinations (severe, mild) x (low, high) in the (severity, emotion) table do occur.

Thankfully the few imperfect tinnitus measuring tools include VAS (Visual Analog Scale) to approximate intensity of symptoms, and TFI/THQ-type of questionnaires to assess impact on life.

The reason there is confusion is that there is a strong correlation between intensity of symptoms and emotional impact, so there is a rough and reasonable equivalence in most cases, but it's important to separate the two dimensions because it helps understand the role of coping: how does someone with severe tinnitus manage to have little emotional impact, and how does someone with mild symptoms get affected so much? These are the 2 quadrants that can help advance coping techniques.

 

[vermillion]

Or because they have severe tinnitus or know individuals with severe tinnitus who are working and living their lives as normally as possible.

Perhaps it's denial to insist everyone must cope with severe tinnitus in the exact same way. To insist that people with severe tinnitus cannot function, despite evidence of members who do.

I do not disagree with you Tinker Bell. I just believe that there is a limitation. A limitation where people like @snow86, @Telis, among others have no choice of coping. And unfortunately this limitation is not acknowledged or even recognised as something true. Take for example that thread of @Adamwynn

So, I've just come from Harley Street in London, having just had an appointment with the UK's and probably the world's leading ENT Doctor.

And he told me that tinnitus volume as long as there is no current infection is always at 20 dB and the perceived loudness is always related to emotional perception and stress towards it.

And given the right frame of mind everyone can habituate/return to silence/near silence.

Help is far more then away. That's my point. That's denial. Doctors that not only won't help you, but they convince your friends and your family that you are just a crazy, spoiled, OCD brat that whines for a silly sound, which can't be such a big deal. I speak from personal experience here.

 

[Candy]

https://www.dailymail.co.uk/health/...tus-tales-Susanna-Reid-reveals-condition.html

You can always rely on the Daily Mail to cover tinnitus...

The BTA noted that at the Talking Tinnitus Expo too...!

 

[kelpiemsp]

We're not: at least one person here doesn't think severity should be a measurement of emotional impact.

I'd prefer if the severity was an "as objective as possible" way to measure tinnitus, in order to be as similar as possible to all other conditions where severity correlates with intensity of a condition (asthma, urticaria, headache, cancer, pain, diarrhea, etc). Consistency is important as a way to ensure as little misunderstanding as possible.

The emotional impact is another dimension that is often correlated with intensity/severity, but that needs its own degree of freedom as we know that all combinations (severe, mild) x (low, high) in the (severity, emotion) table do occur.

Thankfully the few imperfect tinnitus measuring tools include VAS (Visual Analog Scale) to approximate intensity of symptoms, and TFI/THQ-type of questionnaires to assess impact on life.

The reason there is confusion is that there is a strong correlation between intensity of symptoms and emotional impact, so there is a rough and reasonable equivalence in most cases, but it's important to separate the two dimensions because it helps understand the role of coping: how does someone with severe tinnitus manage to have little emotional impact, and how does someone with mild symptoms get affected so much? These are the 2 quadrants that can help advance coping techniques.

Thank's @GregCA! I was attempting to point out the hypocrisy of this situation. But you said what I was thinking.

 

[Tinker Bell]

I do not disagree with you Tinker Bell. I just believe that there is a limitation. A limitation where people like @snow86, @Telis, among others have no choice of coping. And unfortunately this limitation is not acknowledged or even recognised as something true. Take for example that thread of @Adamwynn

Help is far more then away. That's my point. That's denial. Doctors that not only won't help you, but they convince your friends and your family that you are just a crazy, spoiled, OCD brat that whines for a silly sound, which can't be such a big deal. I speak from personal experience here.

I think everyone's limitation is different, which is what I am trying to point out. There are members struggling to cope with tinnitus that is audible only in quiet rooms. For them, that is their limitation. I think we need to acknowledge that everyone has their own personal limitation.

I think that doctor's advise is another topic, but I understand your point. I know the pain of a doctor belittling my suffering, too. And I think we have members here doing similar emotional damage. Members belittling others who have had the strength to overcome their suffering and live with loud tinnitus. Whether the insult is from a doctor or a forum member, neither are supportive nor help members cope.

 

[Jcb]

Seriously guys the arrogance of some members on here if laughable especially the self appointed master of tinnitus Michael who are you to tell anybody on how this hell effects them. To say if it's severe or not, get off your high horses people.

It's not a competition of who is suffering more or who has the loudest fecking noise in their heads, we are supposed to be in this fight together, helping each other yet we shoot people down so easily.

I've said it before and I'll say it again, people's egos are one of the biggest issues on here, the need to be right and think themselves to be an expert on all matters when they are clearly not and constantly contradict themselves, it's extremely sad.

Isn't this type of exposure a good thing no matter how small the platform may be?

 

[IAmCalifornia]

Seriously guys the arrogance of some members on here if laughable especially the self appointed master of tinnitus Michael who are you to tell anybody on how this hell effects them. To say if it's severe or not, get off your high horses people.

It's not a competition of who is suffering more or who has the loudest fecking noise in their heads, we are supposed to be in this fight together, helping each other yet we shoot people down so easily.

I've said it before and I'll say it again, people's egos are one of the biggest issues on here, the need to be right and think themselves to be an expert on all matters when they are clearly not and constantly contradict themselves, it's extremely sad.

Isn't this type of exposure a good thing no matter how small the platform may be?

Absolutely agree. The arrogance and lack of sympathy is shocking.

I can't even believe this is a debate or argument. Not painting a general brush but a few bad apples y'know.

Cure could come out tomorrow and these bad apples would complain. They'd win the lottery tomorrow and complain.

These are the "CAN I TALK TO THE MANAGER" types.

 

[Jazzer]

This is a perfect example of armchair experts

Er......I've had Tinnitus for 28 years.
Who would represent a bona fida expert Ed?

So a breakfast TV programme decides to do an item on Tinnitus, and conveniently decides to build it around one of their own 'in house' light entertainment presenters, who we imagine has a touch of Tinnitus.
Of course we can not know the extent of it.

The crucial aspect to Tinnitus is the severity which it can, and does reach.
Has it taken her Joie de vivre, her career, her future, her smile, her modus operandi? No.
What impression would the casual observer come away with?
Did this item portray an occasional discomfort, or did it show 'hell on Earth?'
If it does not show the spectrum of suffering it is inaccurate, and homogenised.
Would you televise an item on motor neurone disease just portraying a guy managing to walk down the road, albeit with just a shuffling gait.
It is too serious a subject for that kind of dismissive treatment.
There needs to be a perspective.
I do not subscribe to the theory that all publicity is good publicity.
Just my view of course.

 

[fishbone]

Mine is the same, too. It's a very high pitch noise that increases in volume to match my sound environment. I was once in a 90dB environment, and my tinnitus was still piercing above all noise. I obviously did not stay there long!

Earplugs are annoying because they essentially lock in the tinnitus and prevent you from hearing other sounds. I have the added challenge of my hearing loss doing that, too. It's not easy to hear beyond tinnitus when you cannot actually hear.

I am glad @fishbone was notified. He very clearly has severe tinnitus. Yet members on this thread have implied his tinnitus is mild because he lives his life, finds joy and spreads joy.

Really it comes down to how we measure tinnitus. Is emotional impact the only measure?

I would give my life and my remaining soul to have mild tinnitus. My hearing loss level is at almost -80 dB on the 4-8 kHz range. It makes life challenging. Having such a horrible hearing and this un-maskable menace is no cakewalk. I juggle so many issues alone on a daily basis. It's what I do, It's how I live and I am still excited about life and doing great things.... I have 2 choices, either give up or keep pushing through no matter what. I choose option 2!

 

[coffee_girl]

You just can't win with this group

"This person doesn't have it bad enough!!! We need to flame them!" etc.

No wonder nobody wants to help us =[... If the tinnitus community can't even unite under one banner then don't expect anyone else to. You are your own worst enemy at the end of the day.

 

[Tinker Bell]

I would give my life and my remaining soul to have mild tinnitus. My hearing loss level is at almost -80 dB on the 4-8 kHz range. It makes life challenging. Having such a horrible hearing and this un-maskable menace is no cakewalk. I juggle so many issues alone on a daily basis. It's what I do, It's how I live and I am still excited about life and doing great things.... I have 2 choices, either give up or keep pushing through no matter what. I choose option 2!

Exactly, thank you for sharing your experience. You obviously both have severe tinnitus and manage to live your life, proving that it can be done.

 

[Tinker Bell]

Er......I've had Tinnitus for 28 years.
Who would represent a bona fida expert Ed?

So a breakfast TV programme decides to do an item on Tinnitus, and conveniently decides to build it around one of their own 'in house' light entertainment presenters, who we imagine has a touch of Tinnitus.
Of course we can not know the extent of it.

The crucial aspect to Tinnitus is the severity which it can, and does reach.
Has it taken her Joie de vivre, her career, her future, her smile, her modus operandi? No.
What impression would the casual observer come away with?
Did this item portray an occasional discomfort, or did it show 'hell on Earth?'
If it does not show the spectrum of suffering it is inaccurate, and homogenised.
Would you televise an item on motor neurone disease just portraying a guy managing to walk down the road, albeit with just a shuffling gait.
It is too serious a subject for that kind of dismissive treatment.
There needs to be a perspective.
I do not subscribe to the theory that all publicity is good publicity.
Just my view of course.

What tinnitus "item" on a breakfast TV program are you referring to? This thread was referencing a tweet. The journalist complained about her tinnitus on Twitter. She later linked to a resource for individuals suffering with tinnitus.

We were referencing her tweet. She does not need to convey the full spectrum of tinnitus with one tweet, but one tweet did point out to her followers that our condition exists. It raised awareness. It pointed out that even when you think you know someone — like a TV personality — you really have no idea what challenges they face. Is that a bad thing?

Ironic that we are annoyed that her tweet might cause casual observers to make assumptions about tinnitus when we are doing exactly the same thing by making assumptions about her life and tinnitus.

 

[Agrajag364]

Don't know if someone's posted this already but look at the top rated comment on the Daily Mail article about this:

Awful condition. I had it for 10 years due to undiagnosed Lyme disease. I've finally managed to cure it through weekly acupuncture with a Chinese medicine doctor. Took six months. It really is very very annoying and an exhausting condition. Relentless. Feel very blessed to have silence now.​

 

[Tinker Bell]

https://www.dailymail.co.uk/health/...tus-tales-Susanna-Reid-reveals-condition.html

You can always rely on the Daily Mail to cover tinnitus...

The BTA noted that at the Talking Tinnitus Expo too...!

I wanted to bump this so that others saw it.

Her one tweet lead to multiple articles, including this one highlighting some of the responses her initial tweet received. Others sharing their stories, talking about considering suicide, sharing their pain.

Just one tweet that raised awareness and gave people an outlet to share and support one another. How is that a bad thing?

 

[coffee_girl]

Because there will always be the complainers and the whiners who contribute nothing to anyone or anybody. This lady literally talked about her tinnitus and bringing it into the spotlight, but oh noes it isn't good enough...only these "selected" individuals know the "true" horror of tinnitus!!!

Her tweet might have pushed a parent into talking to their teenager about his/her head phone use, or it might remind people of how fragile their ears are....but no let's just brush it under the carpet because "NOOOO her tinnitus is mild, she's an attention seeker!".

 

[Candy]

Her recent tweet (she is big in the UK) has given other people a platform to share their experiences in a more visible way. It's all the comments that shed light on the condition that are important in raising awareness.

 

[IAmCalifornia]

let's call it what it is

The majority agree her tweet was a great thing to bring awareness.

Those few couple o' members (you know the ones, you know who you are... come at me bruh) can kiss my black a*s

She doesn't suffer enough according to YOUR standards? How about be part of the solution, even it means responding logically to a positive impact on this horrid condition...

Christ the world is full of idiots.

 

[Ed209]

Er......I've had Tinnitus for 28 years.
Who would represent a bona fida expert Ed?

At the moment? I'd say nobody is. We are an expert on our own tinnitus and how it affects our lives, but that's where it ends.

We must help each other and not dismiss other sufferers out of hand, like we have lived in their heads and walked in their shoes. My posts were referencing a new trend I'm noticing where some members appear to be taking ownership of the condition; like no one else is allowed to suffer unless they can prove their tinnitus is like theirs, which is nonsense. None of us really know what anyone else is going through or has been through: Nobody.

I understand where this comes from as many are suffering quite terribly at the hands of this condition, so I get it. But we must be more united. All Susanna has done is tweeted about the hard time she was having with her tinnitus, and this forum has exploded with people saying "she's an attention seeker" and other silly things.

Since I joined Tinnitus Talk I've always tried to be honest. Whenever I've hit rock bottom, I've posted about it. I've been through some incredibly traumatic times in my life (like many of us), so now I like to let other people know that I'm doing a lot better. I'm aware that many people in my shoes would have left this forum already, meaning a lot of stories like mine are left unheard.

I've never advocated silencing people. I think it's vitally important that people freely post how they are feeling so they can get the right support. Nobody wins if people bottle up their true feelings. On the other hand, the same respect should be given to people who are coping and want to share their experiences; it works both ways.

The tinnitus community are an odd bunch at the best of times, but I fail to see how a celebrity raising awareness can be seen as a bad thing.

 

[Jazzer]

As always - we all take a view.....

 

[emmalee]

I have 2 choices, either give up or keep pushing through no matter what. I choose option 2!

Option 2 is my choice also, fishbone. I do hope you are doing well, it's nice to hear from you.

 

[JohnAdams]

Who gives a flying monkey that people are simply "aware" of tinnitus.

These people's so-called awareness doesn't bring us closer to peace of mind from being cured.

Go really research FX-322. If that goop can get into the cochlea effectively, it's not just going to not just grow hair cells, but transform our auditory system into a truly regenerative system aka a cure.

THIS IS WHAT NEEDS AWARENESS.

Frequency Therapeutics needs a military budget level of funding and if this stuff works then Will McLean should become the president of the earth.

Stop with the empty platitudes. We need to spread awareness of this drug NOW!

This technology is the most significant thing humans have ever produced period.

The entire civilized world should be focused on this.

Wtf people get hyped damn #flaminghotcheetos.

@Contrast @grate_biff @Markku @annV @threefirefour @Manny @85dB T @IAmCalifornia @Artazanasss @Ed209 @deeznutz #kimkardashian #sourcream #tomsnaturaldeoderant @therealdonaldtrump @popeFrancis ###widespreadpanic

 

[IAmCalifornia]

Who gives a flying monkey that people are simply "aware" of tinnitus.

These people's so-called awareness doesn't bring us closer to peace of mind from being cured.

Go really research FX-322. If that goop can get into the cochlea effectively, it's not just going to not just grow hair cells, but transform our auditory system into a truly regenerative system aka a cure.

THIS IS WHAT NEEDS AWARENESS.

Frequency Therapeutics needs a military budget level of funding and if this stuff works then Will McLean should become the president of the earth.

Stop with the empty platitudes. We need to spread awareness of this drug NOW!

This technology is the most significant thing humans have ever produced period.

The entire civilized world should be focused on this.

Wtf people get hyped damn #flaminghotcheetos.

@Contrast @grate_biff @Markku @annV @threefirefour @Manny @85dB T @IAmCalifornia @Artazanasss @Ed209 @deeznutz #kimkardashian #sourcream #tomsnaturaldeoderant @therealdonaldtrump @popeFrancis ###widespreadpanic

I've been spamming on Susanna Reid's twitter, constantly tagging Frequency and the British Tinnitus Association along with the ATA asking "ARE YOU AWARE OF FX AND THEM DOING GOD'S WORK".

 

[coffee_girl]

As always - we all take a view.....

Nah, you pretty much harass people who don't share YOUR views...and your shady behind needs to be called out on it.

 

[Jazzer]

At the moment? I'd say nobody is. We are an expert on our own tinnitus and how it affects our lives, but that's where it ends.

We must help each other and not dismiss other sufferers out of hand, like we have lived in their heads and walked in their shoes. My posts were referencing a new trend I'm noticing where some members appear to be taking ownership of the condition; like no one else is allowed to suffer unless they can prove their tinnitus is like theirs, which is nonsense. None of us really know what anyone else is going through or has been through: Nobody.

I understand where this comes from as many are suffering quite terribly at the hands of this condition, so I get it. But we must be more united. All Susanna has done is tweeted about the hard time she was having with her tinnitus, and this forum has exploded with people saying "she's an attention seeker" and other silly things.

Since I joined Tinnitus Talk I've always tried to be honest. Whenever I've hit rock bottom, I've posted about it. I've been through some incredibly traumatic times in my life (like many of us), so now I like to let other people know that I'm doing a lot better. I'm aware that many people in my shoes would have left this forum already, meaning a lot of stories like mine are left unheard.

I've never advocated silencing people. I think it's vitally important that people freely post how they are feeling so they can get the right support. Nobody wins if people bottle up their true feelings. On the other hand, the same respect should be given to people who are coping and want to share their experiences; it works both ways.

The tinnitus community are an odd bunch at the best of times, but I fail to see how a celebrity raising awareness can be seen as a bad thing.

In my opinion the question of severity should always be raised.
It is kind of relevant, don't you think?
It is the variability that is a crucial aspect.
Apparantly there have been thousands of tweets and replies, which is a good sign, and which hopefully will help to redress the balance.

 

[JohnAdams]

I've been spamming on Susanna Reid's twitter, constantly tagging Frequency and the British Tinnitus Association along with the ATA asking "ARE YOU AWAKE OF FX AND THEM DOING GOD'S WORK".

Thank you. Seriously.

 

[JohnAdams]

In my opinion the question of severity should always be raised.
It is kind of relevant, don't you think?
It is the variability that is a crucial aspect.
Apparantly there have been thousands of tweets and replies, which is a good sign, and which hopefully will help to redress the balance.

Stop arguing with the experts you tinnitus heretic.

Don't you just want to find who wrote that and tell them to their face how stupid they are? What's sad is I bet they are good salaried people that have a cushy life, they certainly don't have tinnitus. That's impossible.

Seriously this may be the most ignorant statement ever made in the history of mankind. We need to be fighting to overthrow this crap.

Ephesians 6:12 King James Version (KJV)
12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.