Find your (tinnitus) tribe!
The feeling of being alone is always a little depressing. Being alone in something like having tinnitus was one of the worst feelings I had to go through in my life. There was nobody who actually understood what I was going through and what it did to my life.
Discovering that there in fact are many others out there experience the same problems and fighting the same battle already made me feel better.
Reading about their problems and learning how they dealt with certain situations also gave me hope. Of course there are still so many people out there suffering terribly due to ear ringing, but there probably even more people who learned to handle this condition and life their lives in just a normal way.
I have talked about this before and named several groups on Facebook or associations that offer help. Read more about it here: https://thetinnituslife.com/2017/08/14/what-helps-you-keep-going/
Those groups are often very messy with real negative comments, I never understood why people bring others down like that. Especially in a vulnerable situation like seeking help when desperately hoping and waiting for relief of tinnitus. So I found my tribe more where there is understanding and love.
That I found with TinnitusTogether and withDeutsche Tinnitus Stiftung.
It is so many things rolled into one, a blog, a YouTube channel and let´s just say he is an activist – Lawrence, the founder of the page, or you could even say it is a movement, got tinnitus through exposure to loud noises in the army. He shares facts, advice and a big part of his work is prevention- he wants to spread the word on tinnitus and hearing loss. His big goal is to make it known to the younger generation and prevent it to happening to them and at the same time offer comfort and help to those who suffer already.
Tinnitus Together is not just the name of his project – it is what he really does! He shows that we are not alone in this – he encourages people to share their stories and to see that there are many others out there. To get inspiration from others and the feeling of having a go-to-place helps.
Here a link to his page: https://tinnitustogether.webs.com/
Deutsche Tinnitus Stiftung
The foundation was founded at the Tinnitus Center Charité, it is a part of a clinic in Berlin specialized in tinnitus treatment. It´s goal is to get funds for tinnitus research, to raise awareness and also tinnitus prevention.
They follow various projects, one of them is #fighttinnitus – an educational project /campaign to inform the public, but especially the younger audience about hearing loss and tinnitus. For example they set up informational stands at festivals beside other campaigns.
You can follow them on social media to get info on tinnitus and stay up to date on the latest research results. Also of course get connected with the Charité clinic and get treated.
Check out therepage here: https://www.deutsche-tinnitus-stiftung-charite.de/en/home/
Those are the two pages I actively follow and where I find to get a lot of support and info that is really useful.
They both also work on helping people to connect and to not feel lonely in this. They encourage people to share their stories.
I shared my story and here is what I wrote:
I loved reading about the stories others shared…so now I decided to also share mine.
I got my tinnitus over nine years ago after a sinus infection yet again. In the beginning the sound was annoying, but manageable as I only really noticed it during the night time. I just put on my favorite tv show “Gilmore Girls” every night to go to sleep and my life went on as normal.
But with every ear infection and sinus infection the tinnitus became worse. It got to a point to where I thought my life could not continue anymore. It just seemed louder than any normal outside noise in my daily life. It must have been about one or one and a half years after my tinnitus had first started to show up….I guess if I had had the guts to jump from the window I would have done that. I was not able to sleep, and during the day I just feel like freaking out and / or crying. I got super depressed. I stopped everything, I only went to work and then straight to bed. In bed I cried and hated this tinnitus, hated my life and my body.
I became angry, resentful and just really sad. To top it off I got a headache through all that tension that wouldn´t go away. I had a headache that lasted for a year…it was there every day. I took tons of pain killers and my situation just seemed like it would never change. I had to move home to my parents, because I felt like I couldn´t life on my own anymore.
Then I went to the movie theater and watched the movie “The way” – I quit my job the following week and walked 820 km on the “Camino de Santiago” in Spain. My headache went away…in fact it was gone from the first day on.
Back in Germany I started my life again. I still struggled a lot, even though it was easier without that piercing headache.
Now, I can say…the past 3 years were the most important ones on my tinnitus journey. I learned how to relax and how important routine is for me. I learned to use affirmations to get back to a more positive way of thinking. I have morning routine now: meditation, yoga and pranayama….I also workout at the gym at a daily basis. I would have never considered myself as a spiritual person but lately I started to connect with that kind of literature and found a connection to the universe and step by step I´m finding my way back to love myself and my body again.
Now after nine long years I can say that I´m happy again. It was a fight – a long fight, until I found out that I needed to accept it instead of fighting it.
I also started a blog (thetinnituslife.com) to share myexperience and my journey in the hope to make the journey shorter for others. Nine years seems like a long time to find peace again. I want that others get to that point quicker…most doctors didn´t really help me. They just added to my feeling of loneliness. But I also feel like this is getting better – more and more information is out there and more doctors / healers / . . . know what people with tinnitus really need.
What is your story?
Hand in your story so that others can see that they are not alone . . .
I also follow of course the American and British Tinnitus Association, but these are the two pages that I love the most!