Hearing loss: “Connect with others living similar experiences – you can learn so much from each other and find comfort in sharing stories.”
Published Jun 7, 2023 • By Polina Kochetkova
In this interview, Carly talks about her hearing loss story with all of it’s ups and downs. She describes the daily challenges she faces due to her tinnitus and partial hearing loss. Carly explains us what it feels like to suddenly lose hearing and how to come to terms with it. Now Carly is a hearing health advocate and coach, sharing her experiences online and motivating others.
How did hearing loss change Carly’s life? What does it feel like to live with tinnitus? How to feel at peace with hearing disability?
Discover her story!
Thank you for agreeing to tell your story to the Carenity audience.
First of all, could you tell us more about yourself?
I’m Carly. I’m a hearing health advocate and coach, hearing loss blogger, and writer. I also worked as an Early Years teacher for 14 years in various countries including the UK, Spain, China, and Thailand. I’m originally from the UK and currently live with my partner in a town called Dénia, on the east coast of Spain.
I enjoy walking in the Spanish countryside and mountains with my partner, doing yoga, and baking. I also love spending time with my sister, who lives in the north of England.
My passion is supporting people on their hearing loss journeys with the practical and emotional impact of hearing loss, moving forward with positivity, and achieving their goals.
You have experienced sudden sensorineural hearing loss. How did it happen? How has your hearing loss impacted your daily life and communication with others?
The day I suddenly lost all hearing in my left ear was like any other day. I was at work after the summer, and it was a teacher-training day. I was sitting with my colleagues in a school auditorium listening to a guest speaker giving a presentation. I lifted up my head from my notetaking and all of a sudden my head filled with pressure and a loud screeching sound. I felt disorientated and the room was spinning. This was how I lost my hearing. I wasn’t feeling ill at the time, and I didn’t have a known illness or virus. In that moment, I didn’t know exactly what had happened. I remember a few moments after the incident, turning to my colleague to the left of me. I asked her a question and I could see her lips were moving but I couldn’t make out a word she was saying. I thought, perhaps it was just because there were lots of people speaking at the same time in the echoey auditorium. I then turned to my colleague to my right and could hear her fine when she spoke to me. Later in the day, I began to realize that my hearing had been affected.
My hearing loss had a huge impact on my life. Our hearing plays a big part in the way we interact with the world. I feel I took my hearing for granted until half of it was gone.
In the beginning, I was very sensitive to sound. It’s strange because I now couldn’t hear from my left ear, yet I was more sensitive than ever to noise! I had to force myself to go outside into the city I was living at the time. Every day, I spent a little more time in difficult noise environments. I would walk around the city where I would be exposed to the noise of emergency vehicle sirens, building work noise, busy traffic, etc. It was really difficult and exhausting. With time, I was able to spend short amounts of time in a café with a friend and then later I went for a meal in a restaurant. Little by little, things started to get easier.
With single-sided deafness, I could no longer determine where sounds were coming from – you need two ears to be able to locate a sound source. This means that when I am crossing a road, for example, I can’t rely on my ears to tell me when a car was approaching, and I now need to use my eyes much more to understand and assess my environment.
I also struggle to hear when there is background noise such as music, people chatting, etc. which includes most social situations! In a busy café or restaurant, I have to really focus on the person to whom I am I am speaking to understand what they are saying. I have started naturally reading lips to help me decode fragments of speech in these situations.
Some positives have come from my hearing loss. For example, I have my hearing loss to thank for my love of writing – I would probably never have sat down to write about my life experiences in my blog, had I not experienced sudden hearing loss. I have connected with people all over the world through my blog, advocacy work, and coaching!
How do you navigate communication challenges in social or professional settings? Have you found any particular strategies or tools that have helped you to manage your hearing loss?
When I returned to working in a school after my hearing loss, I was struggling around loud noises. I avoided the lunchroom, playground, music classes, and indoor sports – it was so uncomfortably noisy. My head would fill with the feeling of pressure, my tinnitus would get louder, and I would feel exhausted, uncomfortable, and unwell. Trying to listen all day with one ear can be exhausting, particularly in demanding communication environments such as a class of 3-4 years old trying to get your attention.
I found that I needed some quiet time each day, so would eat my lunch in a vacant classroom instead of the noisy lunchroom.
My hearing loss impacted my work as a teacher. In the classroom, I could no longer identify which child had called me or where they were calling me from. I struggled to understand my pupil’s voices over the background noise of the classroom. I was open with my students and told them about my hearing loss. Even though they were very young, they were super understanding and interested. They would often ask me how my ear was feeling! I had picture cards on the wall, reminding them to raise their hands to speak, so I could see them first before they addressed me. Another picture reminded them to speak one at a time. I actually think that because of my hearing loss, my pupils because more compassionate communicators. I encouraged them to listen to each other more. Of course, things weren’t perfect – it’s impossible for 3-4 years olds to speak one at a time all the time! – But simply showing them my picture cards would help remind them that I couldn’t hear them if they were all talking.
I look back on my time working in the school and wish I had advocated for myself more. I think I just assumed that everyone was aware of my hearing loss. But, I now suspect, many of the staff members had very little understanding of hearing loss, effective communication with people with hearing loss, or, in fact, what had happened to me! I was open in telling people that I couldn’t hear on my deaf side, but I should have explained more about how these impacts my ability to communicate. I don’t think I really knew how to advocate for myself at the time – I wasn’t even sure what I needed to help communication! I remember sitting in staff meetings with staff members speaking over the top of each other and all I could hear was garbled voices. Perhaps I should have requested a staff meeting where I could have taught some deaf awareness… I learned a lot from this experience.
Now, as a coach, I help other people figure out the best way to navigate their work environments and social settings, making sure they get the best out of every part of their lives.
In social settings, such as restaurants, I request a table by the wall or in a corner and make sure my hearing ear is facing the person I am speaking to. I prefer sitting outside on terraces rather than indoors, as it’s much easier to hear people.
It can be tiring trying to listen with just one ear, If I need to take a listening break, I excuse myself and go to the toilets for some quiet time!
I am open about my hearing loss. I am comfortable telling people that I don’t hear too well, and I ask for repetition when I need it. It took time for me to figure out how to self-advocate, but I have found that simply making people aware of my hearing loss usually receives a positive response. For example, the first thing I say to a doctor when I go for a consultation is that I have hearing loss, which generally means they are happy to lower their facemasks when speaking. If I don’t tell people about my hearing loss or explain to them how they can help enable effective communication, how will they know how to help?
…Just as an aside, I left the teaching profession not because of my hearing loss, but rather following my hearing loss I started having vestibular (balance issues) – I have since been diagnosed with Meniere’s Disease and Vestibular Migraines. I found the noise and visual stimuli in schools triggered my balance issues, causing me to feel constantly dizzy and unstable.
Have tinnitus and hearing loss affected your mental health? In what ways?
When I lost my hearing, I realized I had to grieve the loss, just as any other loss in life. Hearing loss grief is a common topic of discussion in my Facebook support group. I feel that it’s something that often takes us by surprise and that is rarely mentioned to us by hearing care providers. For me, it wasn’t until a few months following my hearing loss that I realized I was grieving. I needed to experience the sadness, and anger I had at my body before I could reach a level of acceptance. Once I reached this stage, I was able to start making plans and focus on moving forward with living my life with hearing loss.
As a coach, I help my clients accept the changes hearing loss brings to their lives and support them in envisioning a future with hearing loss, understanding specific challenges their hearing loss may bring such as low confidence, and how to overcome these challenges. By creating subtle changes in their everyday routines, I help them create a plan to get them moving forward toward accepting their hearing loss.
In the beginning, I really struggled with my tinnitus. By nature, it is an intrusive condition, and the more I focused on the noises in my head, the more they made themselves known. My tinnitus caused me to feel stressed, which then seemed to make the tinnitus worse – it was a vicious cycle. I also struggled with sleep. During the day, the sounds of tinnitus can be drowned out by everyday noise, or I might start to forget them because I was keeping busy, but at night time in a quiet bedroom, there is nothing to mask the tinnitus and I found myself focusing on it more. With a lack of sleep, I had less energy to deal with the tinnitus, which also made the tinnitus worse – another viscous cycle! Luckily, with time, I started to reach a stage of habituation, where my tinnitus rarely bothers me. Now, I hardly ever notice it.
You have a coaching business specialized in coaching people with hearing health conditions such as hearing loss and tinnitus. Could you tell us more about it? Why did you decide to do it? What is the main objective of your organization?
Whilst coming to terms with my hearing loss and learning to live without full sound, I started writing a blog, My Hearing Loss Story, and a couple of years later, I created a Facebook support group for people with hearing loss. I realized the power of connecting with others in similar situations. I also discovered my interest in the human aspect of hearing loss and my passion for supporting people on their hearing loss journeys.
For me, I found that after the treatment options had been exhausted, there seemed to be a gap in the rehabilitation journey. Once I got to the stage where there was nothing else the hearing specialists could do for me, I was left to live my new normal with little understanding of how to do this. I had no idea how to navigate the practical or emotional aspects of living with hearing loss. This was a scary time for me. And through connecting with others, I realized I wasn’t the only one feeling like this. There were others, just like me, dealing with associated emotional issues of hearing loss such as sadness (due to the loss), feelings of low confidence or social isolation (due to communication difficulties), and struggling to move forward both practically and emotionally.
I saw a need for support and decided to do something about it by becoming a Transformational Coach for the hard-of-hearing community.
My mission is to help people affected by hearing loss, giving them the tools to empower themselves, move forward positively, achieve their goals, and live a life they are proud of.
My online coaching practice is one of the few dedicated coaching services for people with hearing conditions.
Coaching is a conversation and a relationship that explores your personal beliefs, values, behaviours, and purpose. It is a process that aims to help you achieve your goals and identify and overcome any obstacles. Coaching focuses on your strengths and abilities and can help you to build self-confidence and feel empowered.
Some of the themes I support my clients with include:
- Exploring identity as someone with hearing loss/tinnitus and determining the life you want to lead
- How to move forward positively with your hearing loss or tinnitus
- Limiting beliefs (that little negative voice in your head that holds you back from accepting great opportunities)
- Changing career
- Overcoming feelings of low confidence and/or isolation
- How to be your own advocate
and much more!
I have empathy for my clients which is key in coaching. When my clients connect with me, they know that I will likely understand how they are feeling.
On your website, you offer many resources for people living with a chronic illness. What can we find there? What resources would you recommend to the Carenity community?
Here are my resources:
Coaching website: https://www.carlysygrove.com/
Facebook Support group: https://www.facebook.com/groups/1422427341250724
Sudden hearing Loss Support website (I created this with the support of audiologists and hearing loss charities): https://suddenhearingloss.support/
Facebook page: https://www.facebook.com/myhearinglossstory
What is your current state of mind?
I am at peace with my hearing loss. It is part of who I am.
What are your plans for the future? Any upcoming projects that you would like to share with us?
Yes! I am currently working on a group coaching program. I plan to offer coaching to small groups of people where we can work on key themes such as confidence building and advocacy. I see so much value in sharing experiences and it will be great to give my clients the opportunity to learn from each other.
Finally, what advice would you like to give to members who are also affected by partial or full hearing loss?
You are still the same person as you were before your hearing loss. Remember the things you love and those that make you “you”. Connect with others living similar experiences – you can learn so much from each other and find comfort in sharing stories.
Any final words?
Thank you so much for the opportunity to share my story 😊
A big thank you to Carly for this interview!
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Take care of yourself!