No support : Last week I posted on... - British Tinnitus ...

British Tinnitus Association
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No support

Joeb17
Joeb17
35 Replies

Last week I posted on Facebook about tinnitus awareness week to see if anybody would put a poster up and a link to a video to explain what tinnitus is and a donation link not one of my friends has put like or even shared the link they reply to silly things that are posted why is it so hard to get people to talk about tinnitus and have any of you had the same problem.

John

35 Replies
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Lynne-H

A few years ago during Tinnitus Awareness Week, members of our Tinnitus Group including myself, stood for hours in the cold in our town centre. How much did we collect - the grand sum of £7 !!

Lynne

2 likes
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Joeb17
Joeb17
in reply to Lynne-H

That is just terrible i have just posted on Facebook how ashamed I’m am of the way no one has responded to my post

1 like
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Lynne-H
Lynne-H
in reply to Joeb17

This is why we need this forum because the only people who really understand tinnitus are fellow sufferers. I too have shared things on facebook and had no response. You will, however, get good support on here.

Lynne

1 like
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richard56
richard56
in reply to Lynne-H

I wonder what sort of response you would have got,if you had set up an amplifier and played a tone generator sound set at 10000 HZ !!

2 likes
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Lynne-H
Lynne-H
in reply to richard56

We`d probably have been arrested !!

1 like
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ChooseYourUsername

Great publicity tho! 😅

1 like
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richard56

Sounds like a plan🤔No pun intended!!

1 like
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ChooseYourUsername

Where you collecting in Yorkshire or Scotland? 😃

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Lynne-H

No Stoke-on-Trent where we do actually have the most kindhearted and generous people. I think it`s just the fact that they don`t know enough about tinnitus and what it can do to a person.

Lynne

2 likes
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Joeb17
Joeb17
in reply to Lynne-H

Hi I don’t know if you have seen my post about t shirts

Vista print can make one

1 like
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Blue333

I think most people don't understand it or even care. I remember before I got tinnitus, I didn't know what it was and all I knew or heard about it was "Ringing In The Ears"- I would think how can anyone hear ringing in their ears, must be pretty strange people. I've gone through a lot, years of cancer, anxiety, depression and many other things but tinnitus would have to be the worst because - It Never Stops! The tones and volumes change, 3 or more going on at the same time, never knowing whats next. Nothing drowns it out and only makes it louder, waking me up when I'm able to sleep. It doesn't have anything to do with the ears, deaf people can also hear it, its in the brain. Some say its signals of a damaged brain. Mine started after stopping Cold Turkey high doses of Benzos and other Meds I was prescribed for way too long without safely tapering off. Tinnitus started with the withdrawals. Chirping, buzzing, whining, squealing and the thumping. No Cure-That's The Worst!

2 likes
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Joeb17
Joeb17
in reply to Blue333

After no response from any body on face book I posted perhaps I should have not put this first I said you can’t reply to my post or even share the link about tinnitus but you can reply and shave oh will having pizza and playing games i then said if this post was about cancer or an other illness you would be replying and sharing it.

I got a reply from my step niece calling it an arashole illness and she got likes and saying she’s right so if you can’t get a member of your own family to support tinnitus how are we going to get other people to support it I was so angry I have deactivated my Facebook account and my last post said if even my family can’t support what I am doing how can you be my friends

John

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HayleyStephens

That is so sad. People's priorities are shocking these days. I don't do any social media. When I first developed interstitial cystitis, which is horrendous , believe me. Unrelenting hellish visceral pain, that would make me wonder how I'd get through the next 5 minutes. Noone including my family understood, except my Mum as she has it. Unless an illness is possibly terminal or an illness you can see, people rarely stop to think past that. Unless you have suffered yourself or are a little more empathic and insightful. We have made progress in understanding mental health problems, that's something. You're always going to be better off just sticking with people that truly know, like people on here etc. I have a mild case but it only takes a thought to understand how it is for people with more severe symptoms. You don't need the stress of trying to explain things to ignorant people .x

3 likes
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Joeb17

Facebook was invented so people could keep in touch but it has gone very wrong why do people want to know what other people have had for breakfast etc but don’t want to reply when it is about something that matters some of these people must have very sad lives that’s why at the moment I have come of Facebook.

John

4 likes
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dsh2358

I find that people and Drs are out of touch with this ! I wish they would have it for a week never mind years !!!😡😡😡😡😡

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jmallordturner51

I am with you!

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Freddy17

We are the only people that understand what we're going through. I called a nearby hospital to get information about tinnitus and they didn't even know what I was talkin about. It's hard to find a therapist that deals with tinnitus here in the United States. The only time you hear about tonight is on TV is when they're trying to sell a product that never works.

1 like
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Joeb17
Joeb17
in reply to Freddy17

The other time that you hear about tinnitus and it is in the news is when a famous person comes out and says I’ve got tinnitus and people say oh poor thing and the it goes quiet again

John

2 likes
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dsh2358
dsh2358
in reply to Freddy17

Your absolutely right on target with the Med Field being so out of touch with tinnitus I had Drs look at me like I was crazy or just looking for anti depressants

And they looked at me as a drug addict it’s so hard to deal with never mind Drs turning there backs on us !!!! Thank you

For your post

DSH

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Judyspal

Comment I got last week when talking about my tinnitus to a family member recently,.

Can't you take paracetamol for it ?

People who haven't got it don't understand

3 likes
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HissingSid

The main problem is that others without tinnitus need to “walk in our shoes” before they can connect to how bad it is and give support to people like us. My personal view is that we don’t want sympathy but a cure or at least a means towards silencing this critter that is buzzing about or ringing in our ears. Just because it’s not a fatal illness it doesn’t mean that it won’t lead to that in one way or another. Sometimes it’s better not to be obsessed about tinnitus and just go about our lives as best as we can.

5 likes
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nigelph

I did it last year and the same thing happened to me: about four people liked it! As the tshirt says 'You don't get until you get it'. Actually I would really like such a tshirt for the summer. or next year's T awareness day, We could all wear one!

2 likes
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Joeb17
Joeb17
in reply to nigelph

I think you can get a t shirt printed with what you want on it I’m going to look and if I can get one done I will and wear it I will let you when I find out.

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Joeb17
Joeb17
in reply to nigelph

Hi I have just had a t shirt done on vista print

It says tinnitus you don’t get it until you get it on the front and on the back it says tinnitus look it up on the web.

To get it delivered on the 22nd of jan it cost me £22.88

1 like
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Ruud1boy

The unfortunate reality is the overwhelming majority of the population don't know anything about tinnitus. Any that do just think it's something fairly minor - I was in this group for c.30yrs and wouldn't have given a toss about someone trying to raise funds for this cause. The vast majority of people who actually have tinnitus experience no real problems with it - they have 'slight' or 'mild' T, so they're not bothered. I was in this group for c.10yrs and still wouldn't have given a stuff about any campaigns. I then got promoted to our select band of warriors / sufferers with severe T about 2yrs ago - and fk me, I have droned on about tinnitus to anyone who'll listen to me but even then, I don't think my family or friends have any real comprehension of the level of suffering we are forced to endure.

I might get me one of those T-shirts - 'Tinnitus - you won't get it until you get it'

2 likes
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Ingrid-p
Ingrid-p
in reply to Ruud1boy

I’ve had t for 37 years, before I got it I remember watching a tv programme about a man who had severe t. They played the sound that he was hearing and it was unbelievable. Now I’m that person 😭 although mine isn’t always a problem I seem to go through phases that can last years where it doesn’t really bother me. At the moment mine is bad that’s why I’m on here, although my hearing therapist has told me this is the worse thing to do as it keeps putting attention on the t. Once the brain focuses on it, it’s very hard to not think of anything else. I’ve habituated a few times so I’m hopeful I will again.

Still can’t believe in this day and age that there isn’t more help out there, other than hearing aids, maskers, keeping busy. Ridiculous, there must an answer somewhere. Hopefully Neuromod might help some of us as I’m sick and tired of listening to this b****y noise 😡

4 likes
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Joeb17
Joeb17
in reply to Ruud1boy

Perhaps the British tinnitus association should look in to selling those t shirts

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nigelph

Yes I think its a good idea Joeb17. Let me know about the t shirt.

1 like
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Joeb17
Joeb17
in reply to nigelph

I have just been on vista print web site and you can have any design you want and the prices are not are not bad £12 if I’ve got it right

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Joeb17
Joeb17
in reply to nigelph

Have just received my t shirt from vista print it is great I will wear it with pride hope othe members will get one made it is simple spread the word

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nigelph
nigelph
in reply to Joeb17

Looks like I will be getting one soon!

1 like
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Julia1jasper

Hi there

Am new to this forum and can't believe lack of response. Am on Facebook but don't really use as to be honest I don't have the time and use only for messenger to keep in contact with couple of friends. Had I noticed your requesti certainly would have helped. I've had really loud tinnitus all life ranging from a swarm of bees to something like a fire alarm going off. I never had hearing test as kid and assumed was normal but struggled thro school etc and to understand sometimes and needed concentrate hard to watch tv cos the noise was too loud. Finally head hearing test and told got mod/severe loss in both ears prob from birth so now have aids and an explanation for some of the mysteries. When I learned not everyone had this constant noise it did irritate but have now accepted and don't bother me too much as it's always been there. I belong to another forum and can understand how distressing it is particularly if it comes having never experienced it before. Can't believe the lack of response as most people will experience tinnitus at some point in life and for those when it becomes permanent find it so distressing that it becomes all consuming and destroys quality of life or worse in some cases. I've taken nearly 10 years to start using hearing aids properly and on daily basis and in public and with friends etc as being fairly young i believed it would, and did, cause much Micky taking from friends. I count self lucky that I'd always had my tinnitus friend as I've never known any different but it destroys lives. People need to be aware and understand it as it can and does affect a huge percentage of the population world wide. I started sharing info on the hearing forum initially and now I understand this thing I hope I can possibly share and help others and certainly will in the future promote awareness. I do apologise the epitaph but it would be good to receive any info as am more than willing to support anything that will help.

Kind regards , julia

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jbradford42

Hi I run a Pub I emailed BTA for some posters they sent me two and I proudly show them on the wall at our front entrance and one inside. I also started a awareness and a donation page on Facebook were Facebook donated £1 and I give £10 we are on £11 but it’s a start. I’m always posting on Twitter as we have about 5000 followers so it’s chin up and solder on.

1 like
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Joeb17
Joeb17
in reply to jbradford42

I have got my chemist age uk and Wimborne house were I live and my sister took one I also had a donation page on Facebook but deactivated my account when I said people would pay more attention to my post if it was about any other illnesses and got some nasty comments.but now I have got my t shirt more people will see the word tinnitus and perhaps wonder what it is and look it up.

John

1 like
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NicBTA
NicBTAAdministrator

I think you summed up why we chose isolation as the theme for Tinnitus Week Joeb17. I'm hoping that after last week, if only half a dozen people feel less alone, or able to talk more about how tinnitus impacts them then job done.

Nic

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