Carly’s living with hearing loss story

About Me and My Hearing Loss Story

Hi, I’m Carly. I live in Madrid with my partner, and I am currently working as a freelance writer. 

In August 2016, I experienced a sudden sensorineural hearing loss (SSNHL) in my left ear. The loss was profound, and I am now living with single-sided deafness

At the time of my hearing loss, I was living and teaching in Spain. Away from my family, support was limited and difficult to access in a language I was still in the early stages of learning. 

Following my diagnosis, I instinctively started typing into the Google search bar to find out more information. I had so many questions. I was young and healthy; How could this kind of thing happen? How was there no cure? I felt lost. I read everything I could find about SSNHL, which wasn’t a great deal.

I started to realise that there was still relatively little known about sudden hearing loss which makes it difficult to know where to find information and support. 

Making Connections

I started writing a personal blog, My Hearing Loss Story, to share my experience of living with hearing loss.

In November 2019, I created a Facebook support group for people with hearing loss. This is a group where people can share their stories, ask questions, and offer support to each other. 

In connecting with others through my blog and support group and listening to so many similar stories of sudden hearing loss, I realised there was a real need for a resource where people could access reliable information and support in dealing with SSNHL and related conditions such as tinnitus and vertigo. 

Lack of Awareness

There is a general lack of awareness of sudden hearing loss amongst the public and, unfortunately, many people are misdiagnosed or simply aren’t given the opportunity to see a specialist as soon as possible, which is critical to recovery.

I had put my work before my health. I should have seen a doctor sooner. I’ve thought about if I’d done things differently—If only I’d received treatment withing 48 hours of onset, would I have gained any hearing back? This is something I will never know the answer to and so something I cannot dwell on. For now, I feel thankful for the hearing I do have, and I now appreciate this wonderful sense, so much more than I did before my hearing loss. I’ve made peace with my hearing loss and I feel I am a more compassionate person because of it.

I now know I should have seen a doctor immediately following my sudden hearing loss, yet I didn’t have this knowledge at the time.

Launching my New Website!

It can be difficult to know where to find information and support for SSNHL. Although various articles can be found online, I couldn’t find anything which encompassed the whole sudden hearing loss experience, all in one place. So, I decided to make it myself.

Through crowdfunding, I was able to get the project off the ground by financing the initial start up and running costs of the website.

On April 19th, 2021, I launched the Sudden Hearing Loss Support website – the first website dedicated to providing information and support to people affected by sudden hearing loss.

Click here to visit the website.

In the creation of this website, I have been supported by hearing loss and tinnitus organisations and charities, audiologists, and hearing aid manufacturers and providers. Some have created content for the website or helped with proofreading. Others have shared useful links, images and information. I can’t begin to express how appreciative I am of all the support I have received. 

I hope this resource will be a reliable source of information and support, and that it will prompt people affected to seek immediate medical attention, helping them to have the best chance of recovering their hearing.

To read Carly’s blog, click here.

To visit the Sudden Hearing Loss Support website, click here.

To join the online hearing loss support group, click here.

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