Charlotte, 31, has lived with hearing loss since childhood and struggled for years without the right support. Their local RNID Near You service helped them access home adaptations and prepare for a Bone Conduction Hearing Implant (BCHI). With the right support in place, Charlotte now wants others to know they don’t have to struggle alone.
Early signs of hearing loss
When I was younger, I had constant recurring chronic ear infections. When I started to talk, I couldn’t sound out words correctly. I still struggle sometimes now with how to say a word.
We have realised more recently these issues were related to not being able to hear properly as a child.
Feeling invisible at school
I struggled throughout school with bullying because of the way I sounded. I remember someone asking if I was from a different planet because I didn’t sound like a human. Kids can be cruel.
I felt very isolated. I just wanted to fit in and be like everyone else. I didn’t really know anyone else who sounded like me.
I was diagnosed with hearing loss in my teens and had a lot of problems with teachers thinking I wasn’t paying attention. In fact, I just couldn’t hear what they were saying. It made me feel invisible.
It’s hard to advocate for yourself sometimes and always feeling like you’ve got to fight. I found at school that teachers have so much to sort out and deal with in a class that accessibility falls at the wayside.
My mum’s encouragement
My mum was incredible in advocating for me. She spoke to teachers, always making sure they understood that I wasn’t a problem, that I just needed support and understanding.
I had speech therapy from a young age as when I started to talk, I couldn’t sound words out correctly.
When I was 4 years old, the speech therapist asked me if I liked my voice. I have never felt so proud of my mum and loved by her when she said, ‘You don’t ask a 4 year old that’. She made them understand that, by asking me, it was implying I was different and that something was wrong with the way I sounded.
The long road to support
I was offered surgery to repair my right eardrum when I was in my teens but was unable to undergo the procedure. I was struggling with mental illness at the time, so I said no. In hindsight, I wish I’d had it then.
It’s taken a long time to get myself to a place where things are actually being sorted. I’ve had hearing loss, as well as tinnitus, for pretty much the majority of my life.
It’s only now as a 30 year old that I’m finally getting things in place.
Facing new challenges with my hearing
I am due to have myringoplasty, which is surgery to repair a hole in my eardrum. Unfortunately, due to the size of the perforation and length of time I’ve had it, I have been told I will not regain my hearing in my right ear. The main reason to repair is to stop the recurring ear infections.
Recently, I have also developed hearing loss on the other side, too. Due to physical health problems and mobility issues, I had a fall and smacked the left side of my head which perforated my left eardrum as well. Now, I don’t have a ‘good side’. I used to sit so people were on my left, but it’s even more difficult now to follow conversations, especially if it’s busy and noisy.
Trying a bone conduction hearing device
I trialled a bone conduction hearing device for two weeks on a soft headband to see how I got on. It was overwhelming, weird and positive. As soon as it was switched on, the world became louder.
I went shopping and the noise all around me was a lot. I could hear people talking that I couldn’t even see! My kettle made a noise that was different from how I previously heard it. My partner’s car indicator makes a ticking noise that I couldn’t hear before. It opened up a whole new world.
The trial was really positive overall because it gave me awareness of my surroundings. It enabled me to be more independent.
I now have an upcoming appointment with the surgeon to discuss options. It will make a massive difference to me having this hearing implant.
Hearing loss adaptations at home
I have adaptions in place in my home to help me with day-to-day life. I struggle to hear my doorbell, especially in certain rooms, or if there’s background noise, like a bathroom fan. I struggle with high-pitched noises in particular so, if the fire alarm goes, I have no idea. I now have a vibrating and flashing fire alarm and a flashing doorbell which really help.
I always have subtitles on when I’m watching TV, and my phone flashes and vibrates when I have a call. These seem like such little things, but they make a huge difference to me.
Hearing loss in social situations
My hearing loss can make it overwhelming and anxiety-provoking to be in social situations, so it definitely impacts my mental wellbeing.
When I’m out with friends, places are busy and full of noise. I find it hard to follow the person sitting next to me, let alone multiple conversations around the table. It’s emotionally and mentally draining trying to hear and make sense of what’s been said.
I have to ask people to repeat what they’re saying often, which is frustrating and gets me down. I feel anxious about asking people to repeat themselves, so I have a bad habit of nodding and agreeing, even though I have no idea what’s been said.
I’ve had issues in shops and even at the doctors and hospitals with asking people to repeat themselves. They find it frustrating. But what they don’t realise is it’s just as frustrating for me.
Some simple deaf awareness would go a long way. It would be helpful if people could be mindful of multiple conversations at once. Talk one at a time and face me directly so I can lipread.
Missing key information in public places
The main place I struggle is the train station. They announce platform changes and other important information over the speakers, but I don’t hear that, so I completely miss any information I need. Then my train doesn’t arrive, and it’s very confusing.
This happens in other places too. I went to a captioned theatre show but, when I was in the foyer waiting to go in, important information came through the speakers. I only knew about it because my partner could hear.
I think there needs to be more options for accessible formats for information. It’s hard to be independent when these aren’t provided.
Finding the support I needed
When I was working in the care sector as a support worker, I saw that there was a local RNID Near You service and sent an email for myself.
I had a chat with the RNID Near You Coordinator about all sorts, including what sort of support I was after, my struggles, and what would help. She was really knowledgeable and was the one who told me about my phone being able to vibrate and flash when I had a call.
She also went over details about my bone-anchored hearing aid as I mentioned I was on the waiting list. She mentioned how to talk to work about adaptations and the Access to Work scheme, too.
She also helped me apply for a disabled person’s bus pass and referred me to a local service that supplies assistive technology, as well as to the fire service to get a vibrating and flashing alarm.
How RNID Near You made a difference
The information from the RNID Near You service has been incredibly helpful, and I came away from my initial appointment feeling very positive.
Luckily, I haven’t needed to use the fire alarm, but it’s in place and it makes me feel more safe and secure. The doorbell has been a great help because I never miss the post anymore!
