Poll: Do You Think Your Family Really Understands the Suffering Tinnitus Causes You?

[JasonP]

By family I mean brothers, sisters, parents, spouses, and/or children. You may select up to 4 answers and if you want to be more specific about how your family acts, please do so below.

 

[AWilson32]

I think they do but don't realise just how tortous it is to live with.

 

[DebInAustralia]

No. I don't expect them to either.

 

[Rjbookworm]

Last night my brother and I discussed my tinnitus for the first time since May. He told me that he wants to see me roll with my tinnitus better, asked me why it bothers me, and told me that sometimes a person has to smile through their pain. He also compared my tinnitus to his twitching muscles and fingers and his anxiety.

I get that he doesn't like seeing me depressed, but he was too direct and inconsiderate in his delivery. Also, I never asked for his opinion, but that has never stopped him from giving unsolicited advice.

My mom normally jumps in to our discussions if he crosses a line, but she doesn't think that he crossed a line. She's also getting on my case for being too negative.

My heart hurts right now. Especially since my brother doesn't want to rehash the conversation from last night. I can't clarify anything that I was trying to say. I just wish that my family could try to understand.

 

[Forever hopeful]

@Rjbookworm

I'm sorry to hear that your family is not being supportive. I know the feeling. I've told friends and family and they're sympathetic initially, but then they don't ever ask about it like it Went away. They just expect that you're going to go on as if nothing has happened. Ultimately, that is the goal of habituation. But when you're new to it, that seems impossible.

I hope you get some support from others if not your family. People who don't have tinnitus have no idea. I can't tell you how many people have said to me "oh that would drive me crazy." Seriously? Who would say that to someone? Yes. Thank you. It is driving me crazy and how fortunate you are that you don't have it.

Wishing you the best.

 

[Kendra]

Last night my brother and I discussed my tinnitus for the first time since May. He told me that he wants to see me roll with my tinnitus better, asked me why it bothers me, and told me that sometimes a person has to smile through their pain. He also compared my tinnitus to his twitching muscles and fingers and his anxiety.

I get that he doesn't like seeing me depressed, but he was too direct and inconsiderate in his delivery. Also, I never asked for his opinion, but that has never stopped him from giving unsolicited advice.

My mom normally jumps in to our discussions if he crosses a line, but she doesn't think that he crossed a line. She's also getting on my case for being too negative.

My heart hurts right now. Especially since my brother doesn't want to rehash the conversation from last night. I can't clarify anything that I was trying to say. I just wish that my family could try to understand.

People tend to belittle the sufferings of others when they don't have experience of the trials they are going through. Know that you don't need their validation of your suffering.

As for trying to get them to understand. You could show them a few examples of posts on here that explain well what you're going through. You could also have them listen to audio files that are examples of the tinnitus you have. These can be found on the ATA website.

You are not alone and we here understand your pain. I prayed for you and know that there is hope. Cures are in the works and habituation can very well still happen though it takes time.

 

[Shizune]

I feel for you, and I am sorry your family is not supportive. I have a history of depression and my family hasn't been very understanding with all this, thinking it's just me being negative and making up excuses again. When I ask them to be more quiet they take offense to it.

It is extremely difficult for others to comprehend these types of conditions, especially since they aren't visible. On paper, it's just "you have ringing in your ears" or "things are loud" and people don't seem to realize how debilitating it can become. Or they'll make references to people with said visible disabilities still being happy and toughing it out, as if it's inspiring.

Tinnitus and hyperacusis aren't mental, but they might as well be, at least with the way people regard it. Obviously, it's important to have positivity and resilience, but it's very hard to have both of those things with these types of issues. And I wish people would just listen, educate themselves, and validate our pain instead of treating us like some downers that needs to be intervened with because we're "killing their vibes" or whatever.

 

[Psych]

Good question! I get the feeling, when I share that I have tinnitus, that people are pretty freaked out that this is a thing that could happen to someone. A loud noise in your head? All the time? Even though it bothers me quite a bit these days, because of a change to being fluctuating sometimes, I try not to talk about it too much. Just when it gets to be too much, and then friends and family are quite sympathetic and supportive. But I cut the comments short, even though I'd like to talk about it more, because I know it distresses them that I'm suffering to such an extent. It's hard to habituate with all the fluctuations, but I know it will get better with time, and some days are better than others.

 

[Rjbookworm]

@Rjbookworm


I'm sorry to hear that your family is not being supportive. I know the feeling. I've told friends and family and they're sympathetic initially, but then they don't ever ask about it like it Went away. They just expect that you're going to go on as if nothing has happened. Ultimately, that is the goal of habituation. But when you're new to it, that seems impossible.


I hope you get some support from others if not your family. People who don't have tinnitus have no idea. I can't tell you how many people have said to me "oh that would drive me crazy." Seriously? Who would say that to someone? Yes. Thank you. It is driving me crazy and how fortunate you are that you don't have it.


Wishing you the best.

Thank you so much for your support.

I'm sorry that your friends and family don't ask about your tinnitus more often. I can see why it feels like your friends and family might not care about your situation.


My mom has become more supportive over the course of the past week or so. The only tinnitus that my mom has experienced are SBUTT episodes and low level tinnitus after a rock concert that we went to together. We were very far away from the speakers and I didn't even get tinnitus from that concert.


"Oh, that would drive me crazy" isn't something that someone should say to someone with tinnitus. It's an obvious statement and an unhelpful thing to say.

People tend to belittle the sufferings of others when they don't have experience of the trials they are going through. Know that you don't need their validation of your suffering.

As for trying to get them to understand. You could show them a few examples of posts on here that explain well what you're going through. You could also have them listen to audio files that are examples of the tinnitus you have. These can be found on the ATA website.

You are not alone and we here understand your pain. I prayed for you and know that there is hope. Cures are in the works and habituation can very well still happen though it takes time.

That's true. I don't need my brother's validation. My mom's support has improved and increased.

Thank you for your thoughts and prayers. I really appreciate it. Habituation is a struggle for me. Last night I sat in a "quiet" room and read and I was able to tune out my tinnitus because I was enjoying my book. But this morning I woke up and it was really loud. I found myself thinking, "Is this seriously my life now?!"

My tinnitus tends to fluctuate in volume so that makes habituation difficult. I think that Forever hopeful has a similar situation with fluctuating tinnitus if I'm remembering correctly. Sometimes I get close to hearing silence again because my tinnitus is so faint. That makes me happy. I'm still mindblown that an antidepressant could do this much damage to my body. Just wow.

I'm going to reply to Shizune's post later after I run an errand.

 

[Rjbookworm]

I feel for you, and I am sorry your family is not supportive. I have a history of depression and my family hasn't been very understanding with all this, thinking it's just me being negative and making up excuses again. When I ask them to be more quiet they take offense to it.

It is extremely difficult for others to comprehend these types of conditions, especially since they aren't visible. On paper, it's just "you have ringing in your ears" or "things are loud" and people don't seem to realize how debilitating it can become. Or they'll make references to people with said visible disabilities still being happy and toughing it out, as if it's inspiring.

Tinnitus and hyperacusis aren't mental, but they might as well be, at least with the way people regard it. Obviously, it's important to have positivity and resilience, but it's very hard to have both of those things with these types of issues. And I wish people would just listen, educate themselves, and validate our pain instead of treating us like some downers that needs to be intervened with because we're "killing their vibes" or whatever.

I'm sorry that your family isn't supportive of your depression or your tinnitus. I have a couple of loved ones with depression and I've always done my best to offer support even if I can't directly relate.

I agree with what you said about how loved ones could be more validating. Neither of us are trying to kill anyone's vibe. We just want support like you said.