Telling Friends and Family About Your Tinnitus

[racerfish]

I'm curious as to how people talk to their friends and family about their tinnitus. I'm at a point now where I can no longer go to concerts or pretty much anything with amplified sound beyond a movie. Anything with live music is big no-no for me unless it's classical music and I'm seated in the back.

Most of my friends don't know. All they know is that I don't like going to clubs, bars or concerts, but most don't know the reason behind it. My family doesn't totally get it but now do understand I can't be around loud noises. Is what puzzles some of them is why they can go to a concert and be fine and I can't. I worry too when relatives will start getting married and such. There's no way I could sit through a 2-3 hour reception with live music. The wedding hasn't come up yet, but it will at some point.

So, what do you tell people? How have people reacted? Or do you just suck it up and use earplugs?

 

[Lex]

I have T and H. I have no choice but to let family, friends, and coworkers know so that they can be more careful around me. Heck, I even tell strangers if it means I'll be spared from unnecessary noise. Like when I booked a hotel room for New Year's Eve, I had three room changes until I found one that was quiet enough for me. I had to explain my case to the concierge.

As for invitations, I've declined a lot, but I go out of my way to meet my friends over dinner or coffee at a quiet establishment because I don't want to cut ties.

 

[racerfish]

I have T and H. I have no choice but to let family, friends, and coworkers know so that they can be more careful around me. Heck, I even tell strangers if it means I'll be spared from unnecessary noise. Like when I booked a hotel room for New Year's Eve, I had three room changes until I found one that was quiet enough for me. I had to explain my case to the concierge.

As for invitations, I've declined a lot, but I go out of my way to meet my friends over dinner or coffee at a quiet establishment because I don't want to cut ties.

Have you found most people are understanding? How did they react when you told them?

 

[Lex]

@racerfish

Family and friends are as understanding as they can be. I don't think they really get how it feels, and how there's a big chance I'll be stuck with this forever. They tell me to "get well soon." How I wish that's true! But at least, they don't dismiss me -- and they try their best to accommodate my needs. But they forget sometimes. They would bang a car door too hard, and then say sorry immediately after. Things like that. So I always have my earplugs with me, and I'm always on the lookout for the nearest exit.

I know I'll lose friends along the way, especially my buddies I met at the gym, club, and raves. But that's how it goes. Even without T and H, people's priorities change. I'm lucky I have close friends with whom I have deep ties. I've been through hell and back with these friends, so I know that though I may not be able to see them as often as I want, they'll be my friends for life.

As for family, well they're stuck with me. It helps that I'm part of a very close-knit family.

 

[fishbone]

I have told, family but they are ignorant and still have their kids screaming around me and i'll probably remove them from my activities. Hope your family and friends respect your condition...mine are total idiots

 

[racerfish]

I have told, family but they are ignorant and still have their kids screaming around me and i'll probably remove them from my activities. Hope your family and friends respect your condition...mine are total idiots

Very sorry to hear that they aren't so accommodating. I'd say about half of mine are and half are just like "you look fine, what's the big deal". I guess we all need to do whatever we need to do to stay sane and keep our ears out of harms way.

 

[Marijana]

I have noticed that if people (most of them) don't see that there is something "wrong" with someone they simply can't feel with them. They just see through you like a ghost and say oh or start to talk about their problems (to show you that theirs instead of yours count)
Maybe(!) if they could hear the sound from our ears or if our ears were bleeding they would understand because they would SEE it and believe that there actually is something
My mom is truly the only one that understands. For long time I decided not to tell people about it and if you don't want to do something or go somewhere you don't have to justify yourself to anyone, it's your decision

 

[fishbone]

I have noticed that if people (most of them) don't see that there is something "wrong" with someone they simply can't feel with them. They just see through you like a ghost and say oh or start to talk about their problems (to show you that theirs instead of yours count)
Maybe(!) if they could hear the sound from our ears or if our ears were bleeding they would understand because they would SEE it and believe that there actually is something
My mom is truly the only one that understands. For long time I decided not to tell people about it and if you don't want to do something or go somewhere you don't have to justify yourself to anyone, it's your decision

Yes, you are right! people see us and think we are just like them...BUT when you do tell people and let them know just how bad it is, some like my family just don't care. I think tinnitus is one of the worst ordeals anyone can face, to have it 24 7 and try to be positive and sane...takes LOTS of effort and self discipline. I deal with this and skin/scalp psoriasis and a bit of muscular arthritis and i have mild acid reflux. My advice, to anyone is to just love your self and respect yourself and the life that you live each day. We can try to be kind and love people, but if they don't respect you and your struggles, then just dump them and move on. I am not old at all and still juggle all of these elements daily.

I have had tinnitus since 90 and its hell but that's life...the lack of hearing gets me more than the tinnitus most of the time...

Love yourself and respect those that respect you!!!!

 

[fishbone]

Folks Fish here,

The tinnitus is buzzing like hell, but I have grabbed that little monster and put him in the corner of the room and told him to sit down....(ok, I got that out of the way )

In the recent years after the passing of my folks, I have been trying hard to reach out to people and build new relationships. it's kinda hard doing this because my hearing is beyond horse dong and the tinnitus is very loud and destructive. I still make a great effort to accomplish this and more. I am in the gym 6 days a week , everyone in the gym either sees me and likes to watch me train. I have made good friends by going up to other people and saying hello. The tinnitus is as loud as hell but I careless, I am focused on the human interaction and the positive aspects of life.

I make it a point to explain my situation, to people that I care to make friends with. I am open about my situation, I let some folks know that my ears are ringing loud and that I need to wear my ear plugs because some folks are just ignorant and will drop heavy weights and slam the weights on the ground.

The key for us (folks that suffer with tinnitus) is to be very open with people. Back in the days I use to kinda feel odd telling people about my tinnitus, now it's a must. Living with intrusive tinnitus and horrible hearing loss, it's a must that I let people know. I want to develop better relationships with these people, so being honest is the best policy.

I told my friend about it and he was beyond supportive and amazing. He was trying to accommodate me more and was telling me to let him know if he's being loud and intrusive. He's my gym buddy for those 6+ days a week that we train together.

You will never know just how warm and receptive people are unless you let them know. Now, of course not every one will be supportive. I have tried to convert people that never care and will never bother to help out with our situations.

It's still worth a try! That's all it takes in life, just giving it a try. You can read my posts and I share about how life is a bit lonely for me. In the recent months I have developed 3-4 friendships with people in my gym and I keep doing it. I talk to all the guys and the gals in the gym and do not let my ears steal my thunder.

If you like positivity, my posts will share some and I hope you get some inspiration...

 

[RSV]

Some will say forget about it and it will go away. Sure. But they never had it. Or the persone that told them that never had it. You will get used to it. I have. But it spikes. And I have to get used to it again daily. My pastor says I have it. My wife does as well. come to church anyways press through. They mean well. Nothing effects theirs. The sing maked CD's etc.. But it is to loud so I watch the servive at home on Facebook. And they also understand that.

 

[Smartone202]

@fishbone Really enjoyed that post man. Thank you. Continue to stay strong and inspire other sufferers.

 

[Michael B]

The power of positive thinking!

 

[David Dubros]

@fishbone ...
Always great to read your threads .
I find myself relieved to know you are still strapping on your guns every day.
Its nice to make new friends.
Especially ones who can understand and sympathize.
This week i helped a young single mother of 2 children... both have had and survived brain tumours.
I helped give her a days support and take her where she needed to get to.
The following day i collected food and clothing from a dear friend and dropped it off at the young mother's door.
She was grateful beyond words.
Keep the faith fish...
Peace to you..

 

[fishbone]

@fishbone ...
Always great to read your threads .
I find myself relieved to know you are still strapping on your guns every day.
Its nice to make new friends.
Especially ones who can understand and sympathize.
This week i helped a young single mother of 2 children... both have had and survived brain tumours.
I helped give her a days support and take her where she needed to get to.
The following day i collected food and clothing from a dear friend and dropped it off at the young mother's door.
She was grateful beyond words.
Keep the faith fish...
Peace to you..

Bless you my dear friend. Your short post, really touched my heart. Keep paying it forward and be a hero to someone that needs one

I always try to do this whenever I can. It's the greatest satisfaction, when you can help someone in times of needs....

I can share plenty of stories, but i'll share one story that always states my mission in my life. One day I was skateboarding to martial arts class. The weather was a mess and the streets were flooded, close to 3-4 feet of water. I was going to class and i saw an old man and his wife at the light holding unto the poll and each other. Scared for their lives. I put my skateboard down and went into the waters. Held their hand and took them to the other side of the street. They said "young man you are an angel, ty for helping us". It made me who I am today and I am sure they always remembered that day.

So it's awesome to be a hero and help those that need it. Keep it up and I am glad you liked my post

 

[annV]

You will never know just how warm and receptive people are unless you let them know. Now, of course not every one will be supportive. I have tried to convert people that never care and will never bother to help out with our situations.

It's just that if you encounter too many people who aren't supportive, you no longer have energy to try with others.

 

[fishbone]

It's just that if you encounter too many people who aren't supportive, you no longer have energy to try with others.

I understand what you are saying. If the person matters to you or your situation calls for it, it's worth trying again. I know it can be very frustrating, I been there too many times myself.

 

[Greg Sacramento]

@racerfish It's good to see you posting again.