Understanding tinnitus

[kevcolen]

How can I get family and friends to understand tinnitus? where do I start? Conversations are difficult and understanding becomes frustrating. I'm not an angry person.

[Xene]

Yay kevcolen, go to hear-it.org and that will give you 12 sound examples of tinnitus. Find the one closest to yours and play it at the volume you perceive it to your family and friends. Best explanation you can give them!

Best Wishes

Xene

[RunBrianRun in reply to Xene]

That’s what I did and it worked really well

[surreycccfan]

Hi, I had this type of conversation with someone earlier this week. I think having you immediate family/support network understand can be useful, as often people without T can be sympathetic or dismissive but as they don't have T its hard for them to be empathetic. I think the best thing to help them understand your T is a little education.

I suggest you search YouTube for T sounds and find a sound that is similar to yours (there are lots out there) and have them listen to it and then explain how often (if not constant) you are hearing this and how this makes you feel. I would also suggest you have them have a look at the BTA Take on Tinntus page as this is a really concise resource explaining what T is, how it effects someone with the condition and what things can be done to manage it tinnitus.org.uk/takeontinnitus .

The BTA also have a resource on supporting someone with T which may be useful tinnitus.org.uk/supporting-... .

I hope this helps in some small way

[rabbits65]

Well my dear sister is very very kind to me. Although she doesn’t know what I’m going through , she says she can understand to some degree what it’s like. This is a good way to test just how nice and kind our family and friends are . I don’t talk about my T to them anymore , I just refuse invites if I have bad coping days.

[doglover1973]

It's a tricky one. My wider family are sympathetic but they don't understand what it's like. I don't think it's possible unless you have it . I prefer to talk to people here.

[Griffiths30 in reply to doglover1973]

You have to have it to know! Friends and family never ask me about it and have probably forgotten I told them! Meanwhile the suffering goes on. So again thank you all, I don't feel alone xx

[1966366 in reply to doglover1973]

Spot on Dog lover. Not possible unless you have it. So 8 pints of San Miguel ✌️

[Yogachamp]

HiMy sister has had T for over 20 years but she never really talked about it to me until I started with it 7 months ago so she is very supportive to me but asks me to try not to talk about to much to her as it brings hers back into focus , so that makes it hard . My partner is very supportive to me but anyone who doesn’t have it must find it hard to comprehend . The best advice I have been given from people who have it is try & distract yourself as much as possible & don’t dwell on it & that way you can still try to enjoy life , I know it’s not always easy but I do try.

[purenostalgia]

I think it is impossible like Doglover says, to explain exactly how you feel.

[Graham-E]

Getting family and friends to understand I think is tricky. Generally they really want to know and understand but in reality if you don’t have T then you cannot hold it in your head. It’s almost impossible so it’s not their fault but anyone not knowing 24x7 can feel frustrating. That seems like the problem they cannot know and cannot hold it in their heads what is happening in your head ‘all’ the time with no let up.If you can resolve this frustration then you’ll make some good progress.

Hope you can make sense of this.

[PABLR]

Everyone has experienced a mosquito buzzing around all night and annoying you by the sound in your ear. I have used that analogy as a way of explaining that that is what tinnitus can be like, 24 hours a day, every day. While it gives them a kind of base line understanding of what it is like, I think it is impossible to explain so that people can really understand, in the same way I can't really understand what using a wheelchair every day is like, or even being unable to walk fast or run. I am so lucky in most areas of my health that at 71 I just try not to make an issue of tinnitus except on days when it is really bad - fortunately few. With my hearing, I do give people a heads up as it helps them to walk on my 'right' side, or look at me when talking etc.