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Being Deaf: High-Frequency Hearing Loss & Me

9 December, 2024

Being Deaf: High-Frequency Hearing Loss & Me

I’m not sure how may of my readers know this, but I’m deaf. Not 100% deaf, but certainly enough deafness that it impacts my everyday life. In recent years I’ve been able to get loss-specific hearing aids which have been an invaluable help. I have high-frequency hearing loss which I feel is a type of deafness most people don’t know much about. There is also the prevailing myth that deafness is something that only happens to old people, as part of general physical deterioration. And, despite deafness being a physical disability, it’s often invisible to others, forgotten about – even joked about, which is incredibly offensive. Today I wanted to share my experiences as someone who has been deaf since a very young age, how it affects me and the impact it has on various areas of my life.

In this blog post I am writing about my own experiences as a deaf person living in the UK. I wouldn’t even attempt to write on behalf of all the other deaf people out there, whose experiences of being deaf will likely differ from my own. Hearing loss or deafness is as unique as the individual, and today I’m writing about my unique deafness and related life experiences only.

Why I’m deaf, not Deaf

You may have seen deafness referred to in writing with a capital D. As I understand it, the Deaf community here in the UK – with the capital D at the start – is made up of people who have 100% hearing loss, ie. they cannot hear anything at all, they are completely Deaf. I identify as deaf not Deaf, as I do have some level of hearing.

My maternal grandparents were both Deaf, relying entirely on lip reading when communicating with hearing people who didn’t know BSL (British Sign Language), and a combination of lip reading, sign language and facial expression/body language when communicating with people within the Deaf community.

The type of deafness I have

I have high-frequency loss. This is different from a standard hearing loss where sound is heard, just at a consistently lower audible level than in people with standard hearing levels. My specific hearing loss is very weird, as I’ve been told on numerous occasions by the various audiologists I’ve met throughout my life.

My high frequency hearing loss also seems to be getting worse as the years go on. I had a hearing test in 2020, and since then I’ve gone from ‘severe’ loss to ‘profound’ deafness in the ‘high frequencies’ area of the charts.

My most recent hearing test, in October 2024, confirmed my hearing loss as follows:

90% hearing loss of high tones (high frequency sounds), 40% hearing loss of low tones (low frequency sounds).

The audiologist said that with the same hearing loss, without hearing aids, he wouldn’t be able to have conversations. I didn’t get hearing aids until 2020, which meant I didn’t hear speech in conversations properly until I was over 40 years old.

How my deafness impacts everyday life

I didn’t fully realise just how much my deafness affected everyday life until I had the full hearing levels provided by my loss-specific hearing aids to compare with. The difference is unbelievable – and loud! Well it seemed loud to me, at the start, after 40 years of not hearing anything at the same level as people with ordinary hearing.

Getting my loss-specific hearing aids not only enabled me to be fully involved with spoken conversations with people, but they also highlighted just how deaf I actually am. All the parts of music I hadn’t heard, previously. All the appliances in the kitchen that make sounds, beeps and other noises that I was never aware of. How bloody loud taps are when you turn them on. That birdsong happens right by my house, every day. That my cat purring makes a noise, not just a vibration against my leg as she sleeps. How many sounds in everyday life I have missed out on, for decades of my life. How much I rely on lip reading in order to understand people’s spoken words, and how much I rely on subtitles on the TV, without my hearing aids. Just how deaf I actually am. How stupid I always felt, not being able to hear properly – when it wasn’t stupidity, I was just deaf. And it isn’t my fault. It’s just the way I am.

When and how did it start?

So, what exactly caused my deafness? This has been a recurring question throughout my life – to various doctors & audiologists and asked by friends & colleagues. Unfortunately, I don’t have the answer to this. Ever since I was a child going to audiology appointments, the question has been asked: Why?

It was always narrowed down to two possible reasons: hereditary due to my grandparents’ Deafness (which wouldn’t explain the high-frequency loss in particular), or because I had severe mumps as a toddler. No satisfying or definitive reason, I’m afraid. At this point, I’m over trying to figure out the why – it is how it is. I’m more concerned about accessing the best technology to help me hear better, with the many advancements that have been seen in the audiology accessories field.

Why I wasn’t able to get hearing aids through the NHS

As I live in the UK, you might be wondering why it took me until 40 years of age to get hearing aids. Firstly, I didn’t fall under the umbrella of NHS care until I was in my late 20s, as before this I lived in Jersey, Channel Islands. Secondly, despite being in Jersey (which doesn’t have NHS care but does provide a limited amount of social health care) I did have hearing aids once upon a time. I was very young at the time, between 8 and 12 years old, and the social health care covered standard over-the-ear hearing aids which were battery-powered (small, replaceable cell batteries) and were not loss-specific. They simply increased the volume of everything in life.

They were big, bulky things – I must have looked like I was copying Princess Leia’s hairstyle with them on my ears – and because they didn’t provide the specific hearing assistance my high-frequency loss requires, I still couldn’t understand speech properly. They made my steps on the floor, even soft carpet, uncomfortably loud deep in my ears, but I still couldn’t comfortably converse with anyone. As I was just a child, as far as I was aware this was the only hearing aid option available. Quite possibly, at that time, it was. I have no idea when the technology for loss-specific hearing aids came about. Anyway, I didn’t use them for very long.

For many years I thought that was the only choice I had. Big, bulky, unsightly things which gave me a headache and didn’t make speech comprehension any easier, or the deafness I’d become used to, and coped with. I chose the latter.

When I left the island of Jersey and started living on mainland UK, I decided in my early 30s to look into hearing aid technology once again. There had been various adverts on TV for hearing care, so I decided to pop into Specsavers to have one of their free hearing tests. It was at this point I first became aware of the details of my specific hearing loss, the percentages lost in low and high tones specifically and how this related to the difficulties I had understanding verbal communication. I was given details of the hearing aids which would be suitable for me, but sadly the price was too high for me to consider at that time. As far as I knew (and have had this confirmed recently by my audiologist who worked in the NHS previously) the NHS doesn’t provide loss-specific hearing aids. Only general amplification styles.

It was only during the trials of COVID-19 in 2020 that I decided to investigate hearing aids again. Everyone was wearing masks, making lip-reading impossible. Trying to live independently, doing everyday things like shopping and conversing at the checkout, saying hi to friends on the school run, all the small verbal interactions you have face-to-face at the doctor’s surgery and other places became impossible for me to handle alone – and of course much communication moved to phone call instead of face-to-face. My deafness had never felt like such a disability until that year when the whole world went weird.

I headed back to Specsavers, had another hearing test and took the plunge by putting their top spec loss-specific hearing aids on a credit card that would take me a while to repay (I have since managed it). Therefore, I’ve only really been able to hear anything ‘properly’ since 2020 – the year I turned 40. I had my 40^th birthday in July and got my first ever loss-specific hearing aids the next month, August. What a birthday gift!

Being deaf in childhood

I always knew I was deaf, mainly because I was laughed at by my parents for misunderstanding things, and mispronouncing words, mishearing lyrics and the like. The phrase “she is deaf” was a common one in our house and to family friends, acquaintances etc. Unfortunately, this didn’t translate to getting me any actual helpful assistance with my deafness besides that ill-fated experiment with the social-care funded hearing aids as a pre-teen.

If TV programmes had subtitles available, which in those days was via Teletext 888 service, they were sometimes put on for me. However, if we watched a film as a family, these often didn’t have subtitles available if we watched a video (VHS) – or my father would complain about them being on the screen if the film was on a TV channel. In those days, not every show on TV even had subtitles available. Subtitles aren’t available on every type of media even today, in 2024 – back then, in the 80s and 90s, subtitles were a rare luxury.

I found school difficult – my deafness being just one of many reasons. Teachers taught with their backs to the class, speaking into the blackboard as they chalked up brief notes. I couldn’t see their face therefore I couldn’t lip read. I was forced to extrapolate meaning from what was written on the board and contextual clues. Making and keeping friends was tough as the deaf girl who was also a Jehovah’s Witness – a topic about which I have a library-worth of experiences and opinions to share, but which I’ll try and distil into a blog post for another day. Kids being kids understandably got sick of having to repeat themselves when I couldn’t understand what they were saying through the playground noise. They would repeatedly forget that I needed to see their face to understand what they were saying. It got tiresome for them, and it was easier to be friends with other children, children who could not only hear properly but who were allowed to have sleepovers, birthday parties and could join in with Christmas fun.

They were just children; their feelings and actions were totally understandable and of course I don’t hold any resentment towards any of them. All of this did knock my social confidence though, and I became known as ‘quiet and studious’ throughout childhood, the girl who ‘always has her nose in a book’ and ‘prefers her own company’.

Being deaf as an adult

The social difficulties presented by being deaf of course carried on into adult life. Without being aware of it at the time, I had developed coping mechanisms and bluffing techniques to carry me through most social situations despite my deafness. These are quite difficult if not impossible to explain, as I’ve only become aware of them myself in recent years, since being able to compare and contrast my hearing and consequential social behaviours with loss-specific hearing aids as opposed to life without them. The most obvious coping strategies were being able to make non-committal sounds and phrases to whatever people were saying to me, which could be interpreted as positive agreement, shared outrage, the correct level of surprise, or whatever other reaction the person would be expecting to the thing they just said that I had no clue about.

Why didn’t I just tell people I was deaf? I did, believe me. On many occasions I’ve told people I’m deaf, but because I have some amount of hearing, it wasn’t long before they’d forget to make sure I understood, forget the need to face me when speaking, forget about my deafness. When trying to cement social bonds and not be the ‘difficult’ person in a group, especially amongst people you’re only just getting to know, or in a work situation, it becomes easier and more comfortable to just ‘put up and shut up’. Sad but true.

There is also the fact that telling people I’m deaf has made them suddenly look at me in a different way. This is also difficult to explain. I have shied away from telling new people or colleagues I’m deaf from the outset, because it’s actually quite nice for people to view me as Cara, not as ‘that disabled one’. And I’m not throwing any shade on disabilities, deafness or disabled people there, so please don’t take it that way. I’m probably not explaining it very well.

It can be disheartening to see the change in people’s eyes, that flicker of a mental decision to write me off as a potential friend because I’m deaf/disabled, that thought of ‘oh god she’s going to be hard work’ coming through their facial expression, the awkwardness in their face and body language of me putting words to my disability and they don’t know how to react or respond; or worse, the over-effusive, grating sympathy as if I’ve just told them I’m going to die at midnight tonight. I’m deaf, not almost dead. It’s not that bad. I mean yes, you may have to change how you communicate with me and have a bit of patience, but you don’t have to over-enunciate every single word, or shout into my face (as kindly as you may mean it), or translate what your friend just said to me with big yawny mouth movements and accompanied mimes as if we’re playing charades. And it’s just downright rude to say “oh right!” followed by an awkward laugh, a look at your watch and finding a reason to immediately leave the conversation and my company.

Yes, all of the above has happened.

When I worked in an office, my deafness had more of a negative impact on my job. I’ve had jobs where I’ve had to answer the phones (nightmare), represent the company on a face-to-face basis with customers, as well as just maintaining work friendships with colleagues without it getting weird or awkward for any of us due to my lack of comprehension at any time. Now I’m privileged enough to work from home, be my own boss as a freelance writer, things are so much better workwise.

Being deaf can still present challenges, even though I work for myself, as a writer, from home. An important aspect of sex toy reviews is the sound of the product, for discretion purposes. My husband has been invaluable for his input and opinions in that regard, and these days I simply pop my hearing aids on. Plus, some clients would prefer telephone calls or video meetings (does anyone actually like these, even if you can hear perfectly well?) to email, and I’ve had various offers of telephone interviews and to be part of podcasts etc. Making videos for YouTube, TikTok and other social media where my voice is involved is generally a no-no for me due to a lack of confidence in the way my voice sounds, as I believe it is affected by my deafness.

I put some videos on YouTube years ago where I was speaking to camera, and unfortunately the malicious comments about my voice put me off trying again. I know, never read the comments. It was too late; the damage was done. In any case, I like to think that my product videos without any commentary make them more universally accessible – videos don’t need translating into other languages if there isn’t any language to translate!

The difference my hearing aids have made

Having loss-specific hearing aids has unlocked the door to a whole world I didn’t even know was there. I mean, I knew I was deaf, but I didn’t know how deaf I was. Holy hell. I was missing out on so much. Just everyday lovely sounds (as well as some god-awful ones, I must admit), plus the joy of anxiety-free conversations with friends and family. And just about anyone else, too!

I still put subtitles on when I watch videos, TV shows or films – I’m just so used to knowing absolutely every word that is said. With all the different accents, plus not all faces facing the camera at all times, and some sounds just being out of context or otherwise difficult to identify, having subtitles on makes the watch stress-free and completely enjoyable. It’s so good to be able to hear the different voices, and benefit from all the sound effects and the pieces of music being used in a show or as the soundtrack of a film.

I can understand everything my husband is saying when I’m wearing my hearing aids, and everything my children say, too. For better or for worse! I love listening to music, to podcasts, to audiobooks. In my relationships with friends outside of the home, having hearing aids has completely removed that anxiety I used to have before every meet, every conversation. That I’d have to pretend to hear them, I’d have to make those non-committal noises, I’d have to worry about whether I’d misheard, misunderstood or entirely missed large chunks of the conversation which included important details. I invite friends over for a coffee and catch-up, or out for tea and cake, and it’s just… normal. I don’t have that hidden worry and distance between us, that façade of normal hearing when in reality I’m simply not grasping much of what is said and I’m counting down the seconds until I can hurry away and hide.

All of this said, I don’t choose to wear my hearing aids all the time. What? I hear you cry. Why on earth wouldn’t you want to hear everything in perfect clarity, now that you’re able? Well…

Why I don’t wear hearing aids all the time

Because I can hear everything really well with them on. And that means a lot of sounds and noises that I have had 40 years being used to not hearing. It gets… well, noisy. And it can give me a headache! Hearing things all the time is quite tiring, as it turns out. My brain just isn’t used to it. For example: apparently, I type really loudly. Never knew!

Where I’m at with my deafness and hearing aids right now

As mentioned earlier, I bought my first pair of hearing aids in 2020, the month after I turned 40 years old. A few months ago I bought my second pair, as apparently 4 years is a long time in the world of hearing aid batteries and technology. My first pair’s warranty ran out at the end of August this year, and with the battery life facing increasing struggles, I decided to look into what was available in terms of an upgrade or at least a shiny new pair.

As I’m registered with the audiologists at my local Specsavers, that’s where I returned to check out what they could offer. I was pleased to find out that there were indeed advancements in hearing aid technology, even though 4 years doesn’t seem that long to me really, and I had the best pair available at the time in 2020. Specsavers also offered interest-free instalments as a payment option, something very handy seeing as hearing aids can get be very expensive.

Long story short, I now have a new pair of hearing aids which can be controlled via an app on my Android phone and which can connect to my Android phone to play media directly through my hearing aids too. My last pair could only play media through the hearing aids from an iPhone, which was annoying. I was going around with two phones for 4 years! The domes (the silicone caps which sit inside the ear canal) on my last pair weren’t as comfortable as this new pair. Plus, my new pair can Bluetooth connect with our TV so that sound can stream directly into my hearing aids, there’s the option of a portable charging box for them which is incredibly useful for long travels, and I had more choice when it came to the colour – I chose black, obviously.

They’re under warranty again for 4 years, so any adjustments to the programming (for instance, if my hearing gets worse or I simply want the levels adjusting) are covered, or if there are any issues at all with them. Even without issues, I’m to return to Specsavers once a year so I can get an updated hearing test and assessment, and general check-up.

Although it’s never going to be brilliant needing to wear hearing aids, I’m so pleased I have them. The option to hear properly, just like a fully hearing person, is priceless. Well, a little over £2,000 to be exact, but you know what I mean. I feel more confident wearing my hearing aids, I can join in with any conversation, there isn’t the worry that I’ll mishear or misunderstand chat and jokes, and therefore they have enabled me to expand upon and have a full social life, get closer bonds with friends and elevate my general happiness and life satisfaction levels.

All that said, I still hate telephone calls because I am so used to being able to lip-read people, and noises can sound weird down the telephone line. I still enable subtitles on all media whenever available. It’s annoying when subtitles aren’t available -or they are, but they’re absolutely rubbish, like closed captions (CC) which is an automated service, or the delay and incorrect subtitles on live TV events.

Why I wanted to write this post

I wanted to write about my deafness to help you, my readers, know more about me as a person. Let you in behind the scenes, so to speak. Also, I think that writing about being deaf is a good way to dispel false assumptions and fallacies about deaf people.

Although I can only speak for myself, not on behalf of all deaf people, hopefully knowing more about my deafness and experiences being deaf resonates with some of you out there and educates others who may not have any knowledge about deaf people, our struggles, needs or how to communicate kindly and effectively with us.

I want to let the world know that it isn’t only old people who are deaf, and there is more than one type of deafness – it isn’t a case of either completely Deaf or perfect hearing. Also, specific types of deafness like high-frequency loss present particular challenges and have particular needs. Needs which aren’t always catered for by the NHS, and effective accessibility aids for these specific types of deafness are expensive – therefore, it is a privilege to be able to access them. I wish that loss-specific hearing aids were accessible to absolutely anyone who needs them. Not just those who can afford it.

Something I want to make clear is that deafness isn’t a joke. Just as all you decent people wouldn’t joke about any other sort of disability, like blindness or paraplegia, you shouldn’t joke about us being deaf either. I can’t tell you the amount of times I spoke up to let someone know I’m deaf, only to get back a “what?” or “pardon?” or “speak up!” with a smug grin plastered all over the stupid person’s face, as if they’re the first person ever to say it, and as if it’s the most hilarious joke in the world. It isn’t – it’s incredibly offensive. If someone told you they were blind or partially sighted, you wouldn’t reply by sticking your arms out in front of you and enquiring “who said that?!” in a faux-shocked manner. If you saw someone in a wheelchair, you wouldn’t immediately crumple on the floor as if your legs have given way beneath you, then burst out laughing.
So don’t make jokes about deafness. I’m fucking sick of it.

I hope sharing my thoughts on deafness & my experiences as a deaf person with high-frequency loss have been interesting, and helpful in terms of raising awareness. Being deaf is mentally draining as well as a physical disability, with lip reading and the constant brain-drain of working out context and what sounds are, where they are coming from, resulting in exhaustion by the end of the day. I never knew why social events and simply life without hearing aids was quite so tiring for me personally until I was able to compare to life with loss-specific hearing aids.

Next time you meet someone who is deaf, show some care and compassion, make communication & comprehension as easy as possible, and tell them you know someone else who is deaf. Then show them this post!

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