How to Explain Tinnitus to Friends and Family

[Per]

The good thing about this forum is that I don't have to explain too much about my T. We're all in the same boat although we have different characters to our condition. But how do you explain the curse to family and friends? I met an old friend today and I just wanted to tell him, so I started to explain about chronic noises, incurable condition, not a disease but an annoying "thing, hyperacusis etc. I didn't think he got it at all cause all he replied was: "Oh, I have that from time to time as well" I always feel not understood because people must think I'm a weirdo not wanting to socialize the way I used to anymore. And all because of a silly phantom noise? When I told my brother I actually did it by email and I included a link to auditory examples to make him understand, I sent him this link and wrote that my T is number 9 on that list. http://www.hearing.nihr.ac.uk/public/auditory-examples-sounds-of-tinnitus

It's so hard to make friends and family understand T&H. I really do feel they underestimate the condition and think lesser of my mental capacity, cause the whole concept of T is so freaky and strange in the first place. "Are you sure you can't just go on some medication?" That's another response.

 

[SomeGuy]

Well, you know, I found myself in the same boat, as you say. I have tried to talk to friends and family about the condition, but unless you have T, you don't have a reality on how a small noise can have a big impact on your life.

Greg

 

[Sherri786]

Same here

 

[Relic Hunter]

I really don't try and talk anymore about it. My wife says she doesn't understand what it would be like to have this all the time and she is correct. No one understands unless they have it. She does see the effect it has on me on a daily basis and does her best to help.

My other family members and friends do not see the daily effect it has so I assume they think I am a wimp for letting a "little" noise get to me. I get the same "are your ears still bothering you" question as if this just goes away. Sometimes someone will call and say they have found the miracle cure being sold in the Sunday paper.

In truth we can try and understand anyone who has tinnitus, cancer, stroke or even a common cold but unless we have experienced those things our selves we will not truly ever understand.

I am 62. If there comes one good thing from getting old, it is that you just don't give a damn what people think or say about you.

 

[Markku]

In truth we can try and understand anyone who has tinnitus, cancer, stroke or even a common cold but unless we have experienced those things our selves we will not truly ever understand.

Ditto.

I've experienced it's not really enough to play an audio file that mimics a tinnitus sound to help someone understand the effect tinnitus can have on a person.

The same goes probably for cancer etc. You can watch all the documentaries and depressing life stories about it, but it's still something totally horribly unexpected and new when you eventually get it yourself.

Tinnitus is really, really difficult to explain to others. And for some reason many people don't like to talk about it openly. I never see my Facebook friends talk about it (even though I have many on my list who have tinnitus, some of whom haven't habituated yet and are increasingly affected by it).

Sometimes I feel tinnitus is regarded as sort of a taboo mental disorder that people think must be hidden and not publicly spoken about... which in turn of course negatively affects all of us, since awareness is key.

Markku

 

[Philip Cardone]

Hi
I tried to explain it to my family and they just don't understand

 

[TJPositive]

Hi
I tried to explain it to my family and they just don't understand

As other in the thread have said, it really isn't something that can be explained away in an easy and understandable fashion unless the person you're explaining it to has experienced it themselves. There's so much truth to this. The second best thing you can do if you really must tell someone about it, which I think is important, is to request they educate themselves about the condition so at least some connection can be formed. Not having a go-to person for when tinnitus gets tough can make it all that much worse. It's a terrible thing to already be suffering and when you reach out for help, even if that means just talking with someone, that person can't be of any assistance. I personally can't imagine going about this alone without my mother. Just being able to talk with someone that understands. Fortunately for me, but unfortunately for her, she has mild tinnitus too, and she's overcome hers completely I think.

 

[Leah]

Totally agree on all counts. Even a doc said "oh I have it too" and when I mentioned the tones change an acupuncturist commented "well at least you have a variety" . Not what you want to hear when you are suffering. If we can't get the medical community to understand, then how do we get our friends and family?

 

[Pleasure_Paulie]

What I find the most frustrating about this is when you try to warm people about the importance of being careful and hearing protection and they just ignore you. For example, my elder brother plays in a band many times a week, and thinks wearing musician earplugs is stupid.

 

[Michael Leigh]

What I find the most frustrating about this is when you try to warm people about the importance of being careful and hearing protection and they just ignore you. For example, my elder brother plays in a band many times a week, and thinks wearing musician earplugs is stupid.

I have found the same thing when telling people to be careful of loud sounds and to wear hearing protection. Now I don't bother.
Michael

 

[RonnieCarzatto]

Show them this:

 

[Bill Bauer]

Years ago, I read Sam Harris' blog post about his T.
https://www.samharris.org/blog/item/adventures-in-the-land-of-illness
Of course this was back when I was T-free. I could imagine it very well how it would be to live with something like that. I was horrified that conditions like that could exist. And now I know that I had the right idea back then. So I guess it all depends on a person you are trying to describe T to.