Possibly the Loneliest Condition I've Ever Known

It's hard to believe that 50M people have this condition. In all of my 47 years on this planet I've never met a single person whose had it. The worst part of all this is feeling alone, shameful of my struggle with something so invisible, and that panicky feeling that suddenly hits multiple times a day when your awareness strikes and you remember, oh man, I have tinnitus, F@$#K, that same panicky feeling you might experience if you were suddenly thrown into a pitch dark room all by your lonesome, for eternity. I know this could all change, the suffering aspect for sure, and I might habituate over time like many do, I know this is a real possibility for many of us.

But I sure would love to meet just one person, in the flesh, who is going through the same thing I am. I live in the San Francisco Bay area, does anyone want personal support like I do! A friend who really gets it. I'm a very positive person, just venting here where it's safe, and I work in the mental health profession and I know first hand the power of connecting through loss. I've not heard the words "grief stricken" yet in my online searches. You know, the grieving aspect of this condition. It's real. Grieving the loss of peace and quiet, grieving the loss of hearing, grieving the loss of comfort in the ears, the loss of something so pure you'd never thought for a moment that you'd actually be without silence.

Seriously, grieving is a process and I'm going through all the stages, the anger, the blame, sadness, fear, hope, just a roller coaster ride of emotions. But I guess what keeps me going really is hope. I look forward to the day that I too can post a success story.

I look forward to the day that you can too. Peace my friends. Stay strong. And if there's anyone at all in the SF bay area or even in New Jersey, my stomping grounds, please be in touch. We need to expand our community of support. Over n'out. Sherry

 

@sbradls - Welcome Sherry!

Yes a lot of people have T, but in most cases, it's not a big deal. Some barely notice it. There's a fraction of the population that has severe T (~ 1%), and even then I thought I should have met some of them before, but then again, many people who have T and see me wouldn't know I have it too and wouldn't connect, because - as you know - it's invisible!

So there's quite a few of us, but with various degrees of severity.

Hang in there, it gets better! (the anxiety part at least)

Good luck! (from the SF Bay Area)

 

I live in New Jersey.
Tinnitus is an evil. It hits me many times unexpectedly.
Even today, when I mow my grass,
the noise from my neighborhood house construction spikes me.

Sometimes I feel lonely and isolated.
Sometimes, feel angry and frustrated.
(sigh) ....

 

Yes, I feel alone.....Not in having tinnitus but that I struggle so much with it. I know 2 people who have it and they are completely habituated and don't let it stop them from doing anything, and because of this they don't feel like talking about it at all.

I feel very alone with my hyperacusis also, moreso then with tinnitus because it is so much more rare then tinnitus and I have never met anyone who have heard about it, whereas most people I have mentioned tinnitus to, know what it is.

 

@sbradls
I'm so sorry to hear that you are also dealing with this condition.
It does feel lonely, but I can assure you that you are not alone.
In the early days, I connected with another member here and we happened to live in the same town, 15 minutes away from each other.
Meeting a fellow tinnitus sufferer, and one who had it worse than me, made me feel understood, supported and cared about. Seeing how well she was doing gave me the hope I need to push through those tough early days.
Not only that, but once telling my family, my dad mentioned that he had tinnitus for over 20 years (which from how he describes it is quite severe), and my younger sister also had it for over 5 years. Both were habituated and still are, but my own family members never mentioned it at all! It was news to us all that the we each had tinnitus.
A girlfriend of mine came to stay with us over Christmas and we started talking about tinnitus. She said "I've got ringing in my ear too but I tune it out". I couldn't hear mine over the ambient noise at the time but she said she could! Why didn't she mention that to me when I first told her about my ear troubles?
So yeah, I guess tinnitus just isn't a big deal to a lot of people.
I also agree with what you've written in terms of "grieving". Absolutely spot on. Our loss of our peace, our sense of wellbeing and control. As with all grieving processes, you do move on to acceptance, I know I have. There are small compensations I make, but my new "silence" is soft background noise to mask my tinnitus. I'm OK with that now.
I don't give up hope, and I am still looking for ways to alleviate my tinnitus. I do that now without the desperation I had at the start. I'm habituating, but not giving up.
All the best and welcome to our forum Sherry.

 

Thank you for sharing. I need to learn from you to habituate the T & H.
My problem is the T is very easily spiked and H will be affected.
There are constant adjustment & habituating efforts.

(PS: may be my reactive tinnitus is different from other tinnitus)

 

@sbradls

I’m sorry you are feeling this way, but completely understand.

I’ve have tinnitus for 7 weeks. I just woke up with it one morning with excruciating ear pain. It’s hard and my biggest fear is it getting worse. It makes me paranoid of all noise, which I realize is irrational. I’m trying to work on it.

The day I got it the father of my children (I’ve known him for well over 10 years) told me he hears what sounds like the ocean when you hold a seashell to your ear in both ears and has for years. I asked him why he never mentioned it and he said because he doesn’t care. I now understand why he has always slept with a fan on high at night. He also has never had the best hearing (always asking people to repeat things and constantly saying “what?”), but lives each day as if nothing is wrong. He uses the lawn mower without protection, listens to loud music in the car, uses headphones on a daily basis, etc. His tinnitus never changes.

I still feel alone.

I guess some people are just better at dealing with it.

 

Or they also have a different kind of T. There are many kinds, and studies show (surprise, surprise) that loudness and intrusiveness is correlated with the difficulty in coping (I don't have the references at hand, but I'm pretty sure they were out of pubmed).

My take away is that one should never compare their own ability to cope with others, because we are not in their shoes, and they are not in ours. Deal with your T with your own tools and abilities, the best you can, and don't feel bad if you seem to have a hard time.

Good luck!

 

Its surprising how many people do have statistically yet its just not a talked about issue. I went to my dentist a few weeks ago, which is also an ex customer of mine and told him i now had Tinnitus. He told me his wife has it for 10 years who i also have known for about 10 years and yet unless id spoken to him about it i just wouldn't have known. It makes sense now why she always used to have music blaring in her office at home. My point is its just everyone is suffering in silence, i know the first time i had T and some musical hallucinations for about a week i kept it all to myself because basically i associated it with some kind of mental illness. I also felt ashamed when at the doctors for some reason. Its such a shrugged off condition and treated as though its nothing even by those who suffer sometimes. It seems if you go into the real world and speak about it with people though thats when you will realise how common it is.

 

if only...