Without a doubt there is very low awareness or understanding of Tinnitus amongst the general public.
There is nothing to see and we don't go for treatments so nobody understands what we go through, how life changing it can be and just generally miserable.
There are several really well known celebs .....particularly musicians....who suffer from the condition. Eric Claoton for one.....I wish BTA would approach someone to talk about it and increase awareness and maybe we might get more funding for research and more understanding from people.
Just my thought for the day
Written by
silkysuda
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You're absolutely right that a higher profile for the condition would be desirable. And for some people, knowing that a prominent public figure has tinnitus might be comforting to a certain degree - 'they're living with this condition, so can I'.
The issue with approaching people in the public eye to talk about their experience of tinnitus is that they may not want to. For a lot of folks, habituating to tinnitus means that they have no desire to think about it, or talk about it again. I can think of more than one prominent UK figure we've approached who cited just that reason for not wanting to have their name associated with tinnitus.
Believe me, we've approached musicians, actors, comedians about lending their names to campaigns and efforts to build the profile of tinnitus and many don't respond, turn down the request or want to be compensated financially for their time.
That's fair enough, as they doubtless have many similar requests from other organisations - we would rather spend the money we raise, given the choice, on projects that will increase scientific understanding of the condition and lead towards treatments and therapies.
Thanks for replying...its a shame.Ive just been reading a list of celebs who have posted about it.....didnt realise that Chris Martin has it....and Will.i.Am
Keanu Reeves, Halle Berry, Bruce Willis - and anyone who has ever plugged a guitar into an amplifier and not worn some form of ear protection - it's a long list. I often listen to music at home and it's difficult not to look at my current playlist and not see people on it who have expressed publicly some experience of tinnitus.
Closer to home, I often refer to this interview with Martin Kemp - youtube.com/watch?v=HXofKst... - which brings up the idea that tinnitus is something which can be lived with and doesn't have to ruin lives.
I think he's helped in that when he's not having to put up with a group of people around him constantly asking about how he copes with the condition he's trying not to focus on...
We do work with ambassadors like Jamie Laing, who has a big following on social media and does post about his tinnitus with some regularity - instagram.com/p/CXGbn8rssNX...
Wonderful post silkysuda , I fully agree and support your every word . It certainly is a very miserable condition. I am at the stage where I have accepted my “ fate”. However , no matter however hard we try to accept it and get on with our life it is certainly not at all easy. I sometimes feel alienated. !!!!
Hi silkysuda Jo Whiley & Gareth Malone both have T. There's an interview with Jo Whiley on the Specsavers website and an article about Gareth Malone in the Dorset Echo.
Yeah like Chris Martin of Coldplay that describes his t as "nasty" - then a week later announced that they would be undertaking a 30 date World Tour. People must be thinking that he's going through hell on stage. Lol. Or Noel G who moans that his is t is like a "fan which doesn't turn off" and then announced a series of summer concerts.
In all fairness to those musicians, increasingly live performance is the only way that bands - and the people employed by them - make any money. The Coldplays and High Flying Birds of the world don't have to get in the trenches and sell merch at the merch stall like smaller bands, but the industry - pre-Covid, certainly - had pivoted that way.
Chris Martin personal wealth 125 million; Gallagher earns 5.5 million per year in PRS royalties. My gripe is their "hardship" with t does nothing help REAL suffering.
I'm not sure what your point is - all the money in the world isn't going to magically take away their tinnitus. Neither you nor I are aware of how much their tinnitus affects them beyond the surface level snapshots we are afforded in interviews. And as we're not privy to what they donate to charity privately, how do we know that they're not helping? What is 'real suffering'?
My point is, Pat, I don't care what they donate to charity or their personal wealth situation. What I find bothering is when friends say to me after reading and watching interviews with them 'stars', "well it can't be that bad... etc etc" that it hasn't affected their day-to-day existence. When "real suffering" is being on medication for sleep; loss of employment because people can no longer function properly; suicide ideation. If Mr Martin found his "nasty" t so terrible, he wouldn't be able to even be in a room with a stack of Marshall amps, never mind getting on stage for 3 hours in front of 80,000 screaming fans, night in, night out. Bottom line is, I was commenting on Skudasoda post? I don't think that people in the public eye are aware of how they come across (I can't find the right words, sorry, and I am at work).
I get that you're frustrated by tinnitus - most of the people here are, otherwise they wouldn't be using a support forum - but probably best to take my reply to private chat. Bottom line - we're not privy to what's going on in someone's off-screen life and we can only ever project our own ideas and beliefs onto them.
I prefer not to think of it as life threatening , although I acknowledge that sadly it has an elevated suicide rate. It is life changing but gradually you learn your triggers, your coping methods....for example, I know not to go into busy restaurants with modern decor that has a lot of echoey effects.
I also know where to sit on a large table of people....which for me, with screeching T in my right ear, is to sit on a top corner with my left eat into the table , so I can be involved in the conversation.
I tend to go out for lunch rather than dinner as my brain is exhausted by the evening.
hi silkysuda,I , like many others totally agree with you and share the same frustration. I do get angry more so with like you say, the rising thoughts of suicide because of T and indeed most have love lost their lives. I believe what adds to this, is there not being any lights at the end of any tunnels where other conditions do have something, be it minor or not.
As for the rich and famous, they can only forward their own experiences, some may have it slight, others not, it would need someone with severe T to be any kind of ambassador.
As for raising funds, are there any charities, or lotteries ?. I notice most charities charge a pound a week. It would be a start. That ones for Pat?
There is hopefully going to be some light at the end of the tunnel....I helped assess research papers some months ago ....and there is a lot of research going on. Some grants were approved,,,but it isn't immediate .....these things take time and are in early stages,My view was that at my age I may well not see a difference but I loved the fact that future generations or people younger than me , may be able to benefit from the research findings.
T is , as we all know, very varied, causes are generally unknown and so many different personal experiences. Its not an easy condition to resolve.
Hi silkysudaThats lovley to hear about your donations. I mean if you look around, there are lots of charities and lotteries that require just a pound to enter with prize money( not huge amounts or given every 3 months) that helps raise money for researches etc, I dont see anything like that for tinnitus.
But its just different....not in a bad way.Yes of course I'd prefer not to live with T, but I still love life. I didn't for the first 3 years I have to admit...but I learned and experimented and found my path.
Staying fit and calm and getting exercise is KEY for me.....esp walking
Hi silkysuda . I'm hoping I can get to that stage one day - where I love life again. It's good to know that you've got there. Gives me hope that I might too.
It took time and patience and experimentation......no quick fix, which is what I was searching for.Impatience, anger and 'its not fair' feelings were my own worst enemies.
I do so hope that you will find your way of management......but I cant say that it wasn't a rough road for meat first.
But here I am, and you will be too I'm sure
Be with positive people whenever you can , not just people who complain all the time ...it makes such a difference.
Thank you. I'm on the road to habituation - after 18 months. I guess everyone gets there in their own time. Staying fit & calm is good advice. Thank you.
Don’t forget Hugh Lewis, American pop star. He suffered terribly from T. It’s nearly brought him to take his own life.
I’ve seen the top specialist in all T related sciences and find them to be detached, compartmentalized and hopeless when it comes to T.
It would be simple for a mathematician to design a data analytics program to trace out the origins of T. If we’d learn the causes, we’d be able to help treat or prevent millions of cases. The question is, is there more profit in having T or in preventing it?
Hello SilkySuda, Thank you for your very good post, and I totally agree with you that a lot more needs to be done to raise awareness.February 7th to 13th is Tinnitus Awareness Week. I do hope organisations like the BTA are going to be pulling out all the stops to achieve maximum national publicity. For example, have they approached BBC tv and radio, and itv to try and get them to do a feature on the subject? How about one of Fergus Walsh's detailed analyses on the BBC news?
I take BTAPat's point below that many musicians may not want to talk about it publicly. But it would be great to see someone like Jo Wiley out there talking about it during that week.
And here is another thought. Many of us have experienced the Charity chuggers approaching us down in the city center trying to get us to donate. And last week a guy from the British Heart Foundation knocked on my door at home to try and get me to sign me up for some money. He even had what looked like a little power point presentation ready to show me on the tablet he had with him.
Now I personally don't like this over aggressive style of fund raising, but sometimes being a total blushing violet gets you nowhere. So one suggestion I would make is for the BTA to discreetly approach some of the mega rich musicians suffering from T, and ask if they will consider putting something in their will to make a donation towards tinnitus research when they pass away.
I ve just been saying I think it would be a good idea if there were a tinnitus charity or more so, a pund a wek lottery for cash prizes, people will put.
Reading all this with interest and will look them up 👍 tinnitus has changed my life and character, no doubt about it. I have a more comfortable life now compared to when I was a young student but I had money worries then but not really any health worries...now that has switched round...
My grandad used to say if you have your health you're a wealthy man. xx
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