Things People Say When You Tell Them You Have Tinnitus

The most common response I get from people who don’t have tinnitus and to whom I have to explain what it is, is this: “Oh that would drive me crazy.” Yeah, super helpful. In addition to others, I had a very good friend and my cousin both say that to me.

Today, during my ENT appointment, I was describing to my doctor how my tinnitus had changed from a seashell echo sound to a pure tone ring. He proceeded to tell me a story of one of his patients taking out his hearing aids and how his hearing aids were ringing really loudly but because his patient couldn’t hear, he couldn’t hear the doctor telling him to turn his hearing aids off. So he said he went through the entire exam while they were ringing. He said at the end of the exam he had the worst headache. Are you kidding me? Why on earth would you say that to somebody who just told you that they have that same noise and they can’t shut off like a hearing aid.

People never cease to amaze me and not in a good way.

What are some of the things you all hear from others?

 

"Oh, I would hate that."
Yeah, me too!!! Thanks.

 

Usually the same reaction, just people telling me, “Oh, that sounds awful!” Yeah, no shit, Sherlock. I get that they’re just trying to be empathetic and frankly I myself don’t even know what else they could say instead but sometimes it just grates on my nerves, especially on a bad tinnitus day.

 

That's something I've heard many times as well and, as annoying as it is, I have to admit, if not for the tinnitus, it's probably the way I'd have reacted myself, if somebody told me their tinnitus symptoms.

What really makes me mad, though, are the people who think themselves an expert after five minutes of learning about your tinnitus and tell you how it is no wonder that you're still suffering from it because you just don't try hard enough to get better.
They don't understand how limited the means of easing tinnitus are because they compare tinnitus to things like headaches or a broken bones - things for which you take a pill and / or see a doctor and get better. I cannot even really be upset with them because unless you're a tinnitus sufferer yourself, you have means of understanding what it means to live without silence 24/7.

 

I know people who think the Mayo Clinic can fix anything and I just wonder what reality they live in. As if it's just some stubborn choice just to have chronic illness.

The other unhelpful "helpful" person is the one who thinks that if you suffer for a later time period than they (the one that doesn't have the condition) thinks then the REAL problem is your mentality. It's said in a way as if all suffering is equally bad and just a normal part of the human conditions. It also assumes the sufferer had a charmed life up until the life destroying event so doesn't "understand" that things can be tough.

 

It’s usually:

“OH I have that too when it’s really quiet” or something along the lines of “How horrible, I can’t imagine hearing a ringing all the time!”

Most people seem to either have a super mild version of it, or don’t have it at all. Neither of those groups really realize that it’s a spectrum and not everyone with tinnitus hears the same thing at the same volume.

 

Usually it's along the lines "Oh, I have that too, my ears ring here and there, don't worry it always goes away for me", the very well-intended "Have you tried this and that? That's not possible that it's incurable. " or the "Just don't think about it, not the end of the world."

To be honest, I don't really know what I would want to hear from others, who don't have the tinnitus, regarding tinnitus. What would you consider helpful reaction, advice?

What makes me sad and upset when victim blaming takes place. That the tinnitus sufferer has attracted the tinnitus into their life with negative thinking or it's not getting better because you just don't want it enough.

 

I find the opposite to be so much more offensive (i.e. the person who has not experienced it, but think they have). At least saying it sounds horrible is an admission that you may be suffering from something that they haven't experienced.

Blah. I hate the TRT movement so much more than I hate the doctors. I have learned that a number of the doctors who I got mad at have super high ratings and comments from patients about how empathetic they are.

A lot of the time, they are just taught wrong. It often feels like Jastreboff just mic dropped with all of this overprotection victim-blaming nonsense, and then walked off and watched all of us fight each other. There needs to be heavy educational reform. These doctors don't even know they are wrong.

 

I noticed that too like on YouTube when there’s tinnitus sound therapy videos, people will comment “I only hear mine when it’s quiet” or “I don’t notice it during the day.” or “oh my god this completely masks my tinnitus.”

 

I would give away everything I own to have this sort of tinnitus - only audible in the quiet and non-reactive to masking sounds.

 

Another personal favorite is when someone says they "have tinnitus" but that it comes in for a few seconds and goes away (referring to fleeting tinnitus).

 

Me too. I am sad I don't have that kind of tinnitus when so many people do. Currently I am sitting passenger in a car, 110km per hour on a 7 hour road trip. The road noise, passing trucks and more is LOUD but my ultra high pitch tinnitus is just screaming over the top. I am so depressed. There seems no end to this hell.

 

My dad was playing his music on these big speakers and my tinnitus was easily heard over that because it's reactive and the music sounded distorted cause of it... my tinnitus wasn't caused by loud noise. The music is less loud when I stay in my room while my dad does his thing but I still easily heard over the music.

 

"I heard you stop hearing it after a while."

 

That's a thought that's popped up in mind quite a couple of times, too, especially when I see my ENT because there has been a new development and he just looks at me and says "Wow, that's fascinating!" or "Would you consider psychotherapy?"

 

“Oh, that’s awful”, “oh you’re giving it too much attention”, “oh sure it will go away”, “there must be a cure somewhere, you just need to find the right doctor”. Heard them all and honestly I am not even bothered to reply anymore.

Worst is when people complain they’re going nuts because of lockdown or other silly reasons; I’m like, really? Give them a week of tinnitus and I bet they’ll reconsider what “going nuts” really is about.

 

Honestly, I think that’s because it is true for a lot of people who are lucky enough to have quite mild tinnitus, and sometimes even for those who don’t. If you look for celebrities who have tinnitus, a lot of them state that it doesn’t bother them anymore.

It’s difficult because on one hand it’s obviously great that they’re no longer bothered by it but on the other hand the notion that everyone who has tinnitus is capable of habituation is obviously utter bullshit and harmful because I do believe it’s part of the reason as to why there has been so little research with regards to actual treatments.

 

A well meaning friend sent me a link today on habitation and asked if I had heard of it.

 

I have a young female ENT and she said in our last conversation about my tinnitus that "it will get better in time". I said "I hope so". I wasn't upset with her response. I think she responded in a hopeful and safe way.

What I'm afraid of though is my upcoming MRI which she & another ENT said the loud decibel noise (100-120 dB) is benign. It's a 30 minute MRI and I have severe reactive tinnitus.

 

There's also "Oh, my colleague's wife/friend/neighbor/cousin has it too and he/she has been suffering. It's been really difficult for them."

I kind of like this answer. My gut response is to feel sympathy for the person who they are talking about rather than myself, and then the "not alone" feeling kicks in. So that's my favorite response. It's much better than "Oh, that would drive me crazy" or "Oh, I have it too. I just ignore it."

 

God, the "I have it too" comment... hate it so much. I guess I appreciate people trying to offer sympathy by trying to relate, but I really don't care about what a healthy person can barely hear in silence, nor do I care about 'advice' that downplays the problem. To some, tinnitus just seems like trivia they can tell about themselves if the topic arises, but it doesn't actually impact their quality of life at all. I just stopped telling people about it because I got tired of the insensitive, smart#ss responses.

 

Oh “get over it”... or “oh yeah I have tinnitus too, but I only hear it in a quiet room” or “your ears must be over sensitive”... the last one was from the orthopedic whose MRI technician damaged my ears.

 

My father in law actually said to eat dates that they are good for tinnitus. Like oh yeah, I'll go try some dates. If only it were that easy.

 

I think tinnitus and hyperacusis are experiences that lie outside of normal human empathic ability. When I had my hyperacusis at its worse I was feeling unbearable pain in nerves deep in my ear where I had never felt ANYTHING before. I think it is impossible for normal persons to actually understand what "loud noises make my ears hurt" means when the pain happens in a part of their body they have never felt before. Honestly don't tell people about my tinnitus anymore ever. I will mention hyperacusis to people I spend time with so they know not to hit me with any surprise sounds. I don't think my friends understand but they do respect my situation which certainly gives me the warm fuzzies.

Many symptoms we can experience, such as muffled hearing, burning facial and ear pain, and unmaskably loud ringing, are outside the scope of other people's concept of reality.

 

I have had an MRI with severe reactive tinnitus and fully regret it. I had to stop after a few minutes. Correctly inserted earplugs with 33 dB reduction rate did nothing. I felt like my head was going to explode.

 

Yes, I get those once in a while. Those people really get it, because they have relationships with someone else who shares what it's like with them. Lately, I've been reluctant to share that I have it, as people find it hard to relate to something so, frankly, horrifying (at least a percentage of the time), and they're kind of left bereft, if they care about you. I'll only say something to those closest to me, who already know I have it, if it's really bothering me.

 

They won't get it til they get it.

And are in the ER frantic at 4am with the doctors saying there's nothing we can, do go home.

 

You need to relax.

$$$k you is my usual reply to that.

 

My tinnitus made me totally disabled. I can no longer work. People think I am just crazy.

 

Yeah. Sometimes they even send stuff like TRT or CBT and I know they mean well, but then you try to think how to tell them you've already visited all the local ENTs and scoured the Internet, especially this forum. It is a tricky situation. At least you'll know your true friends when they stick by your side and they don't push you to do things you cannot because of tinnitus.