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British Tinnitus Association
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Should take down post like hers

I think that this website should take down posts like the one from Brett angel

There are a lot of people like me who have thought about ending it and reading her post makes me felel like ending it is the right thing and no puts me of going on the web site in case there are more posts like hers.

John

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Hello John

I know that some of the posts on the forum can be quite distressing to read. I will reply via private message to you.

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

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I must say, it made me feel a bit uncomfortable when I read BA's post. I originally left a previous forum due to the constant talk of suicide. I was so relieved to find a place here where one could interact with people who were mature and positive in their views.

I know what BA feels like, I was there myself in the initial stages but I did not find public forums the place to air this.

Positivity from others has had an enormous and encouraging impact on how I deal with my T and still does.

Sadly people who feel this way need proper help from mental health professionals.

One of the things I feel about forums discussing delicate and personal issues is that they can attract people who are dealing with many and complex issues and a single forum is not the correct place for them.

One of the most comforting things I heard when I was in my initial panic re T was someone who said people who commit suicide over T have other problems as well.

They were probably right.

The recent publicity and photos regarding a young man who recently committed suicide allegedly because of his T made me feel uncomfortable as well for many different reasons.

If this forum goes the same way as some others I will feel there is no uplifting place left to turn to.

That will be a shame for many of us.

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Hi Curlew, I very much agree with everything you have said. It is a forum and as such there are limitations on how much we can help someone who feels they cant continue.

Owing to the nature of our condition ie ever present, I for one read up on it a lot, it informs me and passes my time, keeping my brain off other things. If I come across anything which starts to make me uncomfortable, rightly or wrongly I stop reading. Our limbic systems are more sensitive to emotion this very much includes negative emotions, fear, health anxiety etc. People whom have got to grips with this affliction repeatedly advise to stay clear of such negativity....and it is with good reason. Its a difficult one as none of us would ever wish to deny any help we can give but not to the detriment of our own mental health.

This condition really does influence far more than I could ever realise.

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I agree S. When people have got to such a point they need immediate professional help. I think in a way constant chat back and forth is not at all helpfull and it is certainly not helpfull for others reading it.

I think there needs to be some kind of automatic helpfull protocol on forums in dealing with things when they have reached this stage.

It certainly is a difficult and hard to understand condition.

I feel for all of us, young people with their lives ahead of them especially.

Take care😁

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Immediate and professional help in the UK can only really be A&E, yet despite the Government pledging to up mental health spending....in recent months there have been a few members in BA's situation whom have attended and reported they were sent away with no help whatsoever....in this day and age when someone presents, irrespective of the reason causing it with a will to take their own life...WHY are they being sent away.

Ironically our issues arise from sounds only we can hear yet when we try to seek help, those that cant hear it arent prepared to listen.

U take care too x

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Yes, a lot has to be learnt about this situation.

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Very much so.....

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I dont have other problems. The noise i am suffering personally has been causing me to struggle. I never used the word " suicide". Why shouldnt i be allowed to express how i feel ? Why should i sugar coat things ??

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hi brett , that's the idea for people to express how every one is feeling ,it s like a support group so people can try help if they can ,but you cant treat the group with restriction s we all get depressed and down and bye telling people it s a problemed shared , i use to go support group and we all talked about how we all feel holding back is not the way to get help ,this is one reason the government wont except this as a illness . i think your very brave to say how it s making you feel , take care and hope you can find something that can help you cope

your s sincerely

john

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Thanks. I'm.matter of fact person. Don't expect sympathy etc but just feel how I feel.

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First sorry for saying you were a girl.

I apologise if I upset you I overreacted but your post worried me did not sleep as kept thinking of you keep on with your posts as there are people out there who can help.

T is bad people who have never had it just don’t know how bad it can affect a person I am surprised that even some of my careers have never heard of T and have to explain it to them.

Wish you all the best.

John

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Why would you upset me ? Do you think I am focused on what you say ? No, I've got too much to deal with. Seems you are too focused on what I wrote. Tells you everything you need to know . See it how it is.

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Firstly Brett is a boy not a girl . Secondly, Brett reserves the right to freedom of speech.

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Hi Brett, I honestly think you need more help than any of us on this forum can give you. We’ve all suffered or are suffering with tinnitus that’s why we’re on this forum. It’s a very difficult condition to cope with, but many of us do on a daily basis.

I do understand how you feel, but for many of the people reading your posts it can be very distressing. People are on here to get support and tips on how to live with the continual noise that’s in their head and ears.

I’ve been where you are several times and I expect I’ll be there again, but I will not give in to this as each time my t flares up I come through it and get on with my life. It’s still there 24/7/365 but the brain can and does accept it and learns to not let it bother you. Yes it’s distressing at times, but we have to carry on. Letting it win is not an option as far as I’m concerned. For most of the 36 years I’ve had it I’ve coped, when it’s a problem it’s so hard, but I’ve got through it.

I really hope you find a way to get through this difficult time, I truly believe you will.

Take care, Ingrid xx

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Well said Ingrid... I agree totally! I’m letting this awful Tinnitus ruin my life either.. am trying absolutely everything to try and help me deal with it. We will all get there .... just have to be positive. I believe there is a lot of research going on here in Australia xx

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Brett,

As I did, you expressed an interest in an MBCT course....the one Hazyfan was on at the Royal in London. Im assuming thats something you havent tried. Is it a possibility you can attend that. I know Hazy was having a hard time and it seems to have made a big difference for him. I cant get to London but am embarking on a mindfulness course. Ive tried the Hosp guided meditation link Hazy provided and so far its calming me down a bit. Worth a try?

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thanks . I have been doing tinnitus meditation.

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I bought the Tinnitus mindfulness program produced in America. It wasn’t cheap, but I didn’t find it helpful. I am going to find my own mindfulness program .... has anyone tried hypnotherapy??

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Hi Dar,

I did - 3 x 1 hour sessions with a tinnitus specialist audiologist. She was also a trained hypnotherapist and had used hypnotherapy on her patients....said it worked for some and not others. Didnt work for me in the sense my T remained the same...but it did make me feel calmer about it for a short time. She "suggested"in the session that I accept it...which I did a little bit. We both agreed after the 3 that I wouldnt benefit from any more but could pop in for a random calming session if I ever needed it.

Hope you find something

S

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Hi Shellipops , that was a quick reply ... thank you. Yes ... I think I will experience the same feeling ... I’m going to a meditation course in a few days, I’m expecting it to be a waste of time ( without sounding negative ) will let you know how I go. A strong drink sometimes just does the trick!

Take care ! 🌞

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We all know it's not easy.

Take care of yourself.

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Okay, I did wonder what I might read when I came to this thread and saw so many replies, but I have to say, I'm really heartened by the respectful discussion that's happened, and I want to just add my own little bit.

It's never easy to read or hear from people who are so distressed - by tinnitus, by work, by a failed relationship, by depression whatever, that they feel they can't go on. I was a volunteer for a well known helpline for a number of years and although I was trained, and can deal with the topic in a matter of fact way, it still hits me in the gut every time - so I do empathise.

I hope that here is a safe space for people to discuss honestly how they are feeling and hopefully feel at least understood and heard - and perhaps encouraged to keep going, even if it is for a day at a time.

Equally, if people are looking for positive stories and experiences, I hope that they can find those on the forum too.

Please take from the forum what you need, at the time you need it. If you think a post will distress you - scroll on by. This is a community to dip into and out of. Don't feel obliged to read everything. Look to yourself and your needs first.

Please note, I do read all posts, and for those mentioning the risk of suicide and/or self harm, there is a protocol suggested by Health Unlocked which we follow. If anyone is concerned about such a post, please click the "report abuse" button (which I wish they'd change the title of) which means I see the post sooner than I might otherwise.

If anyone has any concerns, I'm just a click on the message button away, or you can email me on nic@tinnitus.org.uk or call me via 0114 250 9933.

I hope you all have the best day you can.

Kindest wishes

Nic

(BTA Communications Manager and Forum Administrator)

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I think that as a forum people should express exactly how they feel. In that way we can support or advise them as necessary. If people choose to end their life then what can we do? Nothing! I saw this post as a cry for help otherwise he wouldn’t have posted it. Be sensible everyone and give some guidance and support to all who post here.

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Completely agree with you Sid. That is the point of a forum isn't it. Nic's post was spot on - you don't have to read all of the posts. I pop onto the forum about once a week now and if I feel that I can help, then I do. Your posts always offer good, sensible advice and support.

Hope all's well with you.

Angela xx

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Thank you Angela-H let’s all support one another here rather than be negative and dismiss comments made by others. We all want a life free of T noises but know it’s not possible in current times. To those of us who are struggling then we all can lend a shoulder of support. Be kind to everyone as best as we can. It’s not too much to ask.

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Hi Joe,

At no point did I ever intend it to appear the I had dismissed Brett Angels comments...in fact I was haunted by what I managed to read before I stopped.

Personally, for me this type of thread (sounds so trite for something so monumental) rakes up feelings of utter hopelessness.

Hopelessness that I first experienced at the beginning, hopelessness at the situation the person is in and hopelessness that Im not able to offer that person support.

There are other forums, one in particular I dont even look at now as one will inevitably come across such a thread. Personally this forum is a safe haven for me and what is getting me through my journey. I suppose deep down anybody clinging to a rock would want to protect it?

Its totally correct freedom of speech is everyone's right and with Nics posting as guidance perhaps now we have all had this discussion we can get back to being kind to every one as best we can.

Take care

S

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Actually, it wasnt/isnt a cry for help. I guess it was more like a stating the facts and feelings post. I hold no one else in the world accountable for what i decide with my life or the fate of it. Talking on here, going to A and E, calling the Samaritans up is not something that would help me and i dont hold any of them accountable for that. Assumptions are the mother of all...

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It’s a double edged sword. When people reach out there is hope. Obviously not thinking clearly. It’s not making me consider it. Instead it makes me more determined but if I were depressed, it might have the reverse affect.

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Let’s get one thing straight we are all struggling, some of us more than others. I have to put up with this really loud screaming every minute of every day. Yes even I have had thoughts of the easy option (yes you herd right) easy that’s how much hell I go through. This person is obviously at the end of there tether and to be honest none of us have much options my doctor hasn’t got a clue. ENT are the same when it comes to T so that leaves two options self battle it or ? I personally take the battle and pray. Good luck Brett please please be strong.

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Yes, i am at the end of my tether. I believe i am strong. However, we all have the right to take decisions for ourselves.

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The thing I was wondering about is why you posted - as you say you weren’t/ aren’t looking for support from this community but just wanted to state your position as it stood at the time of writing it.

What I concluded, as I often do when I read similar posts on many health related communities and forums - is that you want the BTA and all those not affected by tinnitus, to know just how bad it can get?

Only in this way will charities lobby hard enough and people making decisions about funding research, actually pull their fingers out and do something about tinnitus.

After all there are so many competing invisible conditions and, where funding for research and support are concerned, some of the visible ones are deemed more worthy than the invisible/ organic ones.

The feeling that no one knows or cares about our invisible symptoms or their impact on our lives is the feeling some of us seek to address by posting here I believe. After all it’s hosted by the charity that can flag up the plight of sufferers best in the UK.

Nic does a great job administrating this community but it’s not up to her to provide the kind of support some here will need. The BTA as a charity need to tell the DWP and health minister etc how bad it can get for some. So posts like this are very important.

So we will only raise greater awareness by supporting and enabling others with tinnitus to communicate how they feel about it with complete honesty as BA has done. I worry about a society where only primary mental health issues qualify for society’s compassion. Any chronic illness is going to affect some so badly that they don’t see a reason to carry on. If I’m diagnosed with cancer I can go to a Maggie’s Centre and receive therapies and emotional support.

This is what I, personally would like to see happening for those who are struggling with ALL invisible illnesses - very much including tinnitus.

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I agree with all that you say. I needed an outlet for my pain. Is that selfish ? I don't know . I told it how it was and continues to be. I made it clear that I don't have any expectation of anybody and I don't have any belief that the likes of the bta will help me .

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No not selfish at all. But maybe more strategic than you even intended.

The forums I tend to leave or ignore are the ones where people shout a lot in anger.

You haven’t shouted at all. And personally I value the opportunity you’ve provided for rational, philosophical debate on a very complex and difficult subject.

But also I think, by posting as you have, when in the midst of this awful pain, you do need to heed what others are saying back to you.

When my teeth and ears were hurting excruciatingly all last week I asked my oral medicine consultant to remove all my teeth please. She smiled and pointed out that I was in too much pain to think straight - this wouldn’t help me at all because the pain isn’t coming from my teeth. There is no cure for mine but it can be managed better.

So my own conclusions would be:

A) what comes can also go away. Unless the diagnosis is terminal there’s always hope - which is another reason to post as you have and heed how others here manage. Otherwise it’s not a discussion at all and inevitably this will distress others who are suffering similarly. Tinnitus changes as you know. Yours might change for the better or you may get used to it in time. The way we perceive pain is always very subjective.

B) My personal approach is always try to harness the horrible sensory hell in order to learn what is causing it and hopefully how to silence it so I can hear lovely silence and the sounds of nature once more. This isn’t optimism it’s pragmatism. You seem to be pragmatic too.

C) People do actually care.

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PS you still haven’t said whether or not you’ve seen a neurologist or had vestibular testing?

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Had all tests. I have already stated that I have had all relevant tests, I have exhausted all advice available and used all techniques I know cognitively. The fact is the noise I hear right now is far from a ringing sound. It is an utterly unbearable loud bass sound going bezerk in the ear. There is no way I am going to live with that. If i carry on its utterly miserable and disabilitating. I just can't do it. I don't feel sorry for myself and I am not comparing my plight with anyone elses. I've had loud different types of tinnitus for a long time and found my way round them. This is not the same and it's unbearable. This is no way round.tl this.

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Okay well I did just wonder if neurological disorders had been excluded.

Sometimes people say they have had all the tests but it turns out there’s a whole gamut such as blood tests or biopsies for autoimmune diseases such as vasculitis, rheumatoid arthritis, Lupus or Sjögren’s that it’s never occurred to anyone to test for. If you had a disease that was autoimmune underlying for example then steroids or immune-suppressants could help a lot.

Also I take it you have told your doctors in the same matter of fact way how this new noise is making you feel? Or perhaps you have not because you feel they and you have exhausted all options?

If you don’t know the cause then you don’t actually know for sure that there’s no way around this. Tinnitus is a symptom rather than one condition - there are many causes from hearing loss (which I know you’ve excluded) to Menieres, Ehlers Danlos Syndrome, very rare forms of Vasculitis (which can respond well to drug treatment).

Anyway I won’t go on I promise. I just wanted to make sure you know about these diseases because they are rare and many GPs, neurologists, ENTs really don’t know much about them.

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Cause was noise induced. I have told the doctors exactly how I feel. Thats why I am at the end .

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It is utterly unbearable and I can't take anymore of it. Life isn't infinite and there is no law in the universe that says it has to go on.

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I said I wouldn’t go on and I won’t. Wishing you well.

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