Hello lovely people,
For those of you who are new here: hi, I’m Jessica. I started to lose my hearing at 15
and began wearing hearing aids at 18. I think my hearing loss is now classed as moderate-to-severe:
basically, without my hearing aids I live in a very pleasant underwater bubble with
cotton wool in my ears and with my hearing aids in I won’t get hit by a truck but I
also can’t tell what you’re saying. Mainly I rely on lipreading people
I talk about going through the process of losing my hearing a lot and I’m often asked
for advice on how to cope with it, I’m going to talk you through 6 key tips in this video
but first:
- How do you know if you have hearing loss or not?
Well, if someone has sent you this video… I think they’re trying to tell you something.
Maybe it’s time to get your hearing checked?
Other hints:
Do you turn the volume on the television up to a degree that everyone else in the room
yells at you for?
Do you stare blankly at your phone when someone
calls because supposedly it’s on but you’re not entirely sure if a voice is coming out
of it yet?
Do you find it impossible to follow conversations
when you’re in public?
Do you make people repeat things over and
over again until they get really snarky with you?
Do people in your life complain that you annoyingly don’t listen to them?
Do you say ‘what’
over and over and over and over and over again?
Well, if so, you probably have hearing loss!
...or an Auditory Processing Disorder or similar medical problem.
- or you really are just that self important that you believe you’ve got better things
to do than listen to unimportant people and their meaningless conversations.
In which case:
Take a breath and reassess.
I like to keep things fun and bubbly on my channel but it’s important we don’t shy
away from negative feelings as well and golly, you just clicked on a video about losing your
hearing so you’re probably experiencing some of these too! Losing your hearing can
be isolating, exhausting, scary, annoying and sometimes just make you feel really, really
angry! This is especially true when your hearing is going in your teens or adulthood. Most
support systems for deafness are there to help children- who have likely been born deaf,
don’t have a memory of being able to hear and have young, plasticy brains that are able
to learn sign language quite quickly- or elderly people, for whom hearing loss is culturally
expected and accepted.
If you’re in your late teens, as I was, it’s difficult to get help when adults find
it easy to read you as just being lazy and not paying attention. I can’t imagine how
hard it must be when YOU’RE the adult in charge of phoning the electricity company
or chatting with other parents at the PTA or starting out in your professional life
without the listening skills you’d assumed you’d have.
[internal panic]
- But don’t panic! We’re going to go through this together.
Tip number 6:
Connect with people who are
in a similar situation to you.
I am quite sure there will be many
in the comments beneath this video who are also losing or have lost their hearing. Have
a look at other people’s stories, reply to their comments, start a conversation.
Build your network of friends online.
- P.S. I’m setting up a Discord board where we can all chat, there will be a ‘so I’m
losing my hearing…’ thread.
Isolation is a really significant problem since hearing loss detaches people from interactions
with others. Maybe you live in a family of mumblers and you can’t even understand your
own parents anymore.
The world is built around human interaction and community and whilst it might feel like
deafness can take all of that away… the internet is a pretty leveling playing field
when it comes to communication. If you prefer meeting people in person then your doctor
or audiologist may be able to recommend a support group in your area.
Don’t freak out if they’re all two generations older than you. Age is just a number. You
can have friends with different but complimenting interests.
- Just don’t try to explain the ecosystem of the Kardashians. Clara tried that with
me our entire plane ride to Edinburgh and I’ve honestly never been so confused.
Also: talking to a therapist about your feelings of loss is a good thing. Change is scary.
Tip number 5:
You’re going to feel very vulnerable.
Plan ahead- know the exits and the buses. If you
find yourself in a situation where you feel unsafe you take that Uber, screw the cost.
You’ll find you rely on your eyesight a lot, especially for safety, and the minute
you can’t see you’ll likely freak out. I can’t stand being in a club or a pub and
a light shining into my eyes. For the millisecond of blindness after the light hits I am completely
and utterly vulnerable and it shakes my core.
Try not to get into situations where you’ll need to rely on your hearing. That sounds
obvious but it can be as simple as just not walking alone in the dark
- which maybe you shouldn’t do anyway…? I don’t know what your area is like but…
stay safe, friends!
Many deaf people often feel extremely vulnerable in situations where sounds are relied on to
provide essential information: This can vary from roadside traffic, public announcements
in airports or train stations to the genuinely dangerous stuff like fire alarms.
Plan. ahead.
Make sure you have the best app on your phone to track the trains- something that updates
to the minute. You likely won’t be able to hear any changes that come on over the
tannoy. Freaking tannoy.
- Clara says I need to inform non-British people that a ‘tannoy’ is a loudspeaker.
If you’re getting coffee in the train station, make sure you’re sitting in view of the
board. Likewise in the airport.
Seems obvious but...
It doesn’t matter the degree of your hearing loss: if you cannot hear the announcement
clearly then you might as well not be able to hear it at all so you might as well start
acting like a deaf person and rely on just the visuals.
So face others when they’re speaking, their expressions and body language will put what
they’re saying in context. Make sure you can see a person’s face and lips when they
talk.
And in terms of things being kind of scary now you can’t hear so well: yes, for a lot
of deaf people, night-time can be terrifying: you can’t hear footsteps or fire alarms
or windows opening or…
- okay, now I’m scaring myself.
If you’re watching this as a parent who thinks their child is losing their hearing:
difficulty sleeping can actually be a sign as children will struggle to sleep when they
can’t hear their parents downstairs- they may worry that everyone has gone out and left
them alone in the house.
Bear in mind, nightlights are perfectly acceptable, no matter your age.
Tip number 4:
Pace yourself. Deafness can also be exhausting.
People with hearing loss are unable to look
down at their phones or newspaper and hear what somebody is saying like hearing people
take for granted. They have to concentrate on lip patterns to hold conversations, they
have to focus on a person’s facial expressions and grasp onto the little sound they can hear
and then try to make sense of it all.
This, plus living in constant fear of missing a crucial sound like a fire alarm, can be
mentally and physically draining.
Think about it this way: someone with all of their senses can rely, when crossing the
road, on their ears to be listening for background danger that their eyes cannot see as they
look left and right: the sound of a lorry approaching around the corner, the group of
kids standing behind you who are joking and jostling each other, the ambulance with a
blaring siren that’s a few streets away…
Now imagine trying to gather all of that information
using just sight…?
Tiring. Deep breaths. Pace yourself.
Tied into that: it’s important to know your limits. If you’re sick or tired, how well
you understand others may be worse than usual.
Tip number 3:
Consider technology:
look for a device that works for you.
A professional audiologist, an ear, nose, and throat (ENT) doctor, or a hearing aid
specialist can help you find products. Your local council may even fund things like flashing
doorbells and fire alarms if you can get to the right department (their contact details
can usually be found through the aforementioned doctors but a good google search might help).
Hearing aids might feel like a big step but you can start small with just the inner ear
ones if your hearing loss isn’t particularly great.
To break the technology down:
Hearing aids make sound louder for you and can also be programmed to cut out certain
wavelengths. Depending on your hearin loss. They come in many shapes, colors, and sizes.
Some fit behind your ear, others directly into the ear canal.
FM systems are wireless assistive hearing devices that enhance the use of hearing aids
but can also be used by people who don’t wear hearing aids. The come in two parts:
a little microphone that can be clipped onto the clothes of a teacher or lecturer or…
whomever you’re particularly trying to listen to at that point (possibly even just your
date in a restaurant). The second part is on the person with hearing loss, either working
with a hearing aid or something similar to headphones. The sound beams wirelessly through
to you from the microphone.
It's like a one-to-one system.
They enable sound to be picked up closer to the speaker rather than a microphone that
is on the deaf person so the sound can be much clearer and without background noise.
That’s why it works really well in a lecture or school style situation.
And finally (but in no way exhaustive) a list of other things that can be helpful:
Alerting devices: you can get a little pager that connects to a doorbell, phone and alarm-
and even a baby monitor!- with a blinking light and a vibration whenever one of those
things makes a noise.
There are also personal amplifiers, infrared headsets and telephones that will display
a conversation on a screen.
- That seems like a lot of information, doesn’t it?
Technology to help hearing loss does take a lot of getting used to but they honestly…
do help. You’re scared once you start to use them, it feels like they might get in
the way of a free flowing conversation but actually once you get over that hurdle they
honestly do improve your interactions with other people.
Plus… studies show that people who don’t get help with their hearing loss are more
likely to suffer with depression and anxiety.
Apparently there is also a link between untreated hearing loss and dementia but-
- I am offering you this information as an ‘oh isn’t that interesting’ not a ‘wow,
something new to freak out about’ so take some deep breaths.
If you think there is even the slightest chance that hearing aids could boost your confidence
then go for it.
Side note: I’m often asked ‘but what if my parents aren’t willing to help me get
medical treatment?’
To which I say… “honey. That’s a form of child abuse.”
Now, I’m sure they are reasonable people who don’t want to be accused of such so
maybe show them this video and then have a chat.
Hi.
Tip number 2:
Learn to lipread. I know, sounds very difficult. I did make a video about this, you’ll find
it in my deafness playlist which will be in a card above.
A lot of people suggest throwing yourself in at the deep end when it comes to learning
lipreading- watch YouTube videos on mute without captions, only socialise with people who don’t
vocalise- but, honestly, you’re already losing your hearing… your daily life is
now ‘being thrown in at the deep end’. If you find you’ve started to rely on captions
to understand videos-
- like this one.
[Mouth pattern: Hello]
Then turn them off, get close to the screen and try to pay attention to my lips. Leave
the sound on if that’s helping you and only turn it off once you’ve gained confidence
in lipreading. If there is a video or a film that you love watching then watch it over
and over again, paying close attention to the lip patterning and since you’re already
familiar with the dialogue you’re more like to pick things up.
It’s also really helpful to repeat information back. Lots of things sound alike- especially
when your hearing isn’t great- but they actually feel very different to say. Knowing
how your own mouth moves will help you recognise similar movements in others.
Repeating what someone has said also helps make sure you’ve actually got it right!
The other person will correct you if you’re mis repeating.
You should also encourage people to write things down!
Tip number 1:
Be clear with the people around you about
how they can best help your transition to
not being able to fully hear what is going
on around you.
Just saying “I’m hard of hearing” is a good start but it doesn’t tell the person
how they can then make themselves understood so do follow it up.
This is the hardest advice to enact but: be bold. If you can’t understand what someone
is saying then explain that.
If you are, like me, one of those people who has got into the habit of nodding and smiling
until someone has left and only then realising that you have absolutely no idea what the
person has said then… you’re going to have to be pushy with the people around you.
I’ve been with my wife for 5 years and I’m still training her to jump in whenever she
thinks I’m just pretending to understand.
Because I have no idea I’m doing it until much later!
Key tips:
Tell your friends and family to say your name or get your attention before talking to you.
They’re going to get frustrated if they’ve said a whole paragraph whilst walking up to
you and only once they’re two inches away do you look up.
- Can’t lie, that’s kind of their own fault but a lot of disability is about managing
other people’s emotions. They don’t teach you that in the Disability 101 textbooks but
it’s true.
Also there are no disability textbooks.
Much like babies, bodies don’t come with a manual.
If a person makes sure they have your attention before they start to talk then they won’t
have to repeat themselves and you can all be much happier!
Be clear with what you need people to do. They should look at you when they’re speaking,
take their hands away from their mouths, swallow their food and not look at their phone. If
they don’t do those things and you thus don’t understand them and they get annoyed
about it then just rise above, my darling, rise above.
You tried. They’re the ones making things difficult.
Turn off background noise when you want to have a conversation- no TV or blaring radio.
Ask for restaurant tables in quiet spots and expand your daytime socialising. Cafes can
be just as great as pubs- with the added bonus that some serve alcohol and you can actually
understand the conversation that is going on!
This is a given if you’re underage but if you’re an adult then consider including
others in your audiology appointments. Claudia always says she didn’t realise how deaf
I actually am until she sat in a hearing test with me for the first time and, sitting in
the soundbooth, was baffled at my not noticing the loud noises blaring at us. Audiologists
are some of the best kinds of doctors that I’ve come across. They’re really caring
and can help your family understand what is going on.
So what’s the long and short of it?
Well, first up: don’t panic. It’s all going to be okay. Consider that there may
even be plus sides:
I once fended off a mugger with: “sorry, I’m deaf, what did you say?”
To which he gave me the special ‘oh you poor love’ face and let me go.
Also it’s quite nice while you’re crafting to just be in your own little world. It’s
very peaceful sometimes.
But remember to take your hearing aids out when it’s windy. Top tip.
Final point:
The majority of advice says that you shouldn’t say ‘what?’ when you can’t hear but
instead should say ‘pardon?’ or ‘excuse me?’
Now look, I am all for social etiquette, traditions and good manners but… really… ‘pardon’
and ‘excuse me’ skirt dangerously close to ‘I’m sorry’ and honestly, really,
I’m not.
And I shouldn’t have to be. I don’t want to apologise for my poor hearing
because it’s not my fault, it’s not intentional, I wasn’t too distracted by my phone to pay
attention to you, I’m
just deaf.
Look, I promise it’s going to be okay, alright? All change is terrifying to start with and
yes, I get that this isn’t like moving schools or joining a new office. But perhaps think
of it more like becoming a parent for the first time: your life will never go back to
the way that it was. It’s the end of an era. But it’s the start of one too. You’re
still you: with the same personality, the same likes, the same loves. Maybe your future
looks different now but that doesn’t mean it’s worse or that it’s going to be horrible-
even if you are more tired now! You’re joining a community of people who have been through
what you’re going through right now and there are many support systems in place. Even
if you don’t have help from your parents or guardians or your school isn’t willing
to give you the support you need… well that’s only temporary. Other people will come in
and out of your life, things will ebb and flow but the one constant is you. And the
important thing is that you’re happy with yourself and feeling like you can manage life.
Work on your own emotions first, help someone else put on their oxygen mask second.
You’ll be alright, my darling, you really, really will.
I’ll see you in my next video.
[kiss]