It all started when I was a young boy and suffered with Glue Ear. I ended up having grommets in both ears. Then later down the line, as a teenager, I ended up with a perforated eardrum, which then had to be repaired by taking some skin from behind my ear, which was then stitched onto my eardrum. Because of all of this, plus my parents being deaf, I am meant to have hearing tests every year. Fast forward to 2019, it had been 14 years since I last had a hearing test.

In the last few months, a few of my loved ones have been noticing that I have been asking them to repeat what they said a lot more. My other half put it down to ignorance (which wouldn’t surprise me!) However, I started to feel really self conscious about the matter, and tried to hide it as much as I could. I felt like I was being a burden by asking people to repeat. I didn’t want to accept the fact my hearing wasn’t good.

Finally, I arranged to have my first hearing test in over a decade, and was told by the audiologist that my hearing is at a moderate hearing loss, and with that, it will only get worse over time. Eventually I’ll need hearing aids, and it could get worse than that. Initially I felt my heart drop straight into my stomach. I kept thinking ‘I’m not going to be able to hear properly again!’

For days after, I lost a lot of sleep – worrying about the deterioration of my hearing. I kept worrying about the impact it’s going to have on my life. The uncertainty of what is actually going to happen, and when it’s going to happen. All of this was eating up my energy and motivation to do anything. I decided I didn’t want to talk about it, think about it or hear about it. I just wanted to get on with my ‘normal’ day to day life. Ignoring the fact that my hearing was going.

However, in the back of my mind I knew it was there, and I kept asking people to repeat what they were saying, which naturally brought it back to the forefront of my mind. I couldn’t get away from this problem, I decided I had to face it dead on.

Now I have started to come to terms with it, and I have just learnt to accept that eventually I will struggle to hear without any assistance. I am in a much better position than a lot of people, as I already know Sign Language, and I’ve got lots and lots of connections within the Deaf community. I’m not alone in this, I have friends and family who have knowledge in this, and a great support network within this circle. This is a brand new step in my life, and instead of being scared and worried, I have to face this head on and continue to enjoy my life in the meantime.

I’d love to hear about your similar stories, and how you dealt with things. Would you do things differently? Have you got advice for anyone else going through a similar experience? Drop a comment below.

32 Comments

  1. Reading this was like readibg my childhood… although im scared I have been to my dr a number of times in the last year but they wont so anything..
    I learnt bsl when I was younger briefly but due to luckily not having to use it ive forgotten a lot. My dad teaches the deaf to drive so I have him that can sign but other then that im scared it will get to the point I will never hear my chidrens voices again x

    1. Hi Lynette, it is a really scary position to be in. However, you’re not alone here. There’s so many of us in this position. Maybe try an audiologist? I went to Boots and it was free of charge! They may be able to help you more.

  2. I suffered a perforation while swimming and an infection i left untreated ended up with me having an operation (mastoid) its left me wirh hearing loss in one ear and is deteriorating as time goes on…then i had my son in 2015 and he was born profoundly deaf and is now a cochlear implant user! Im leaning sign language but most importantly iv learnt it mostly from you and Lizzie! Keep up the good work and im sorry you have to face such problems as this! it must be so upsetting to have your hearing and come to terms with the possibility of going deaf completely one day. My thoughts and prayers are with you and thank you for showing us sign with music! My son loves you guys too!

    1. Hi Cheryl, wow that sounds so similar to what happened to me with my op. It’s so nice you’re learning Sign Language and using it with your son. Sending lots of love x

  3. This is why people should learn sign language in schools! Anyone can become deaf but not everyone will go abroad to France or Spain!
    I was born with perforated ear drums in both ears. This meant I had to have grommets and patches on my ear drums when I was tiny! Over the years growing up I had numerous ear infections which cause my left ear to perforate again when I was around 8. I then had to have my ear cut from behind, pulled forward and have it patched that way. During this operation they discovered that the bones behind my ear had actually fused together. I was told I could have an operation to fix this but the success rate wasn’t that great so I didnt go for it. I then had hearing aids growing up through primary school and secondary school. These did help me but I still struggled. I relied on lip reading. In 2015 I moved to Scotland from Devon and I decided that when I had my first appointment with audiology and ENT in Scotland I would ask about the operation for the bones in my ear and they said it was a lot more successful now so I decided I would go for it. Less than a year after moving up to Scotland I had the operation on my left ear. They cut behind my ear (using the scar that was there already) and replaced the bones with titanium! After a couple of months recovering a hearing test showed that the operation was a complete success! I could now hear the clocks ticking and the tapping of a keyboard! I was amazed! I still struggle sometimes but only have to wear my hearing aid in my right ear when my tinnitus is bad or if I had a cold and my ears are blocked.

    1. It’s so great to hear a successful story! I also agree, this is a great reason for BSL to be taught in schools to assist anybody. These situations could happen to the best of us, and if we are prepared, then we have nothing to worry about.

  4. Hi Wayne.

    My son is now 16 and last month had his second tympannaplasty with a radical mastiodectomy. He has suffered for many years with ear problems and had several grommets and then ended up with a perforated ear drum due to the grommet being left in to long, so had his first muscle graft in 2011. He tried hearing aids but he was missing some tones so they decided he would be better without it. In 2015 he start with really bad puss coming out of his ear but nobody would listen until eventually 12months on (2019) they did his surgery realising the infection had gone on to long and had damaged the bones in his ear. He has lost all hearing in his left ear and the hearing in his right ear isn’t perfect. He has started an apprenticeship and wants to be a joiner but being in a noisey workshop he struggles to understand what people are saying. 

    I have done my level 1 & 2 BSL but there’s not enough in these colleges for young people wanting to go into construction that have hearing loss. He hasn’t excepted what has happened to him yet but know it’s going to affect his future 😪

  5. Mine started at 2 years old with tonsillitis which left me with glue ear which wasn’t diagnosed until about 4 or 5 years old, 3 sets of grommits and both my ear drums close to perforation which was why I had the 3rd set, don’t really understand how cutting my ear drums to fit the grommits would help but I was 13 and didn’t even think about it. Fast forward to 16 none of the grommits had worked and was told because of the scarring I had permanent damage and now had moderate to severe hearing loss and would only get worse, 2 years later I was told I was deaf and given hearing aids I can still hear without but it’s a struggle, 12 years later my hearing has definitely worsened and I’m now looking into learning BSL but I have no idea where to start and because I work shifts the courses near by are evening courses and I would miss half of them due to work. I’ve dealt with it in 2 ways 1.i always tell myself there are worse things to have wrong so I’m lucky it’s just my hearing and 2. I make jokes all the time. Let’s face it there are times when you’d like to switch off whether it’s the wife nagging or the kids moaning we’ll I literally can.

  6. L have been deaf since an early age my mum and dad found that l was not hearing them , so long story they had me back and forward for hearing test which a evenly got me and hear aid which help me and l was practically deaf until l was 35 year of age and got up one morning could not hear at all , so after more test l was sent to Southampton to have test for a cochlear implant as when l had the test l had a head scan which they said that l have no cochlear my right ear which l was born with . When hav ing all these test l was so worried as l was losing business as l could not hear on the phone ect.. But now l have my implant of which l have had for 25years now it has given me a new life as l can hear things l never heard before ….. L do hope that you will find you will get on well with any aid that is given to you . Happy days 😏

  7. Wayne I’m 34 and an pretty much stone deaf in my right ear. It was picked up while I was at uni and they have no idea how or why it happened – possibly an ear infection or something that wasn’t picked up in time. I’m meant to wear a hearing aid but I don’t even though I have one. I’m also constantly asking people to repeat themselves or have to walk on their right so I can hear them talking if we’re walking down the street for example. My little boy even said to me once ‘are you deaf???’ To which I replied ‘you know I am!!’. It’s not easy but we all cope. I really should get back to wearing my hearing aid though.

    Building the awareness you have is amazing. I took both of my children to baby sign language classes and they both racked up around 200 signs each by the time they were 2 or 3. It’s a fantastic thing to learn and like you I wish it was taught in schools.

    All the best, Rachel.

  8. I went deaf as a child which a teacher picked up on. She told my mother to have my hearing tested, my mother protested saying that I was just naughty but thankfully had my hearing tested and my hearing loss was severe enough to be registered as deaf. Because I had gone deaf over time rather than born deaf I’d naturally learnt to lip read and got by pretty well if I was looking at the speaker which is why my mother hadn’t noticed any hearing loss but thought of me as naughty and disobedient. An operation a year or two later by a London specialist restored my hearing and my main memory of my deaf years is fear. The teacher who noticed my hearing loss used to punish disobedience by taking the pupil to the front of the class, pulling down underwear and smacking bare bottoms and I think I was terrified because I never knew when or why I was being inflicted with physical pain. I think it’s given me a real longing to communicate with deaf people by learning to sign. I only did BSL 1 before being unable to afford to continue but have continued to learn to sign by watching YouTube videos especially signed songs. I love your videos and hope you put up many more on YouTube so that I can learn more.

  9. Hi I have had hearing loss all my life I have had two mastodxame so no bone behind ear I am surprised to wear hearing aid but I struggle with it keeps blocking my ear canol with wet earwax so I don’t wear it so ear wax can dry does any one else have any ideas what I can do as I need hearing aid to hear people so at mo constantly asking people to repeat I have about 5% hearing in my right ear I’m trying to lip read so I don’t have to repeat

  10. Hi Wayne. I’ve had hearing aids from about the age of 12 but refused to wear then through school until I got to college. I was always self conscious about wearing them and now I can’t be without them. i struggled through school unable to hear properly. They have made such a big difference to me and i wear them everyday now. I still need to ask people to repeat back what they have said sometimes but I’m glad I have them to help me. There are more and more people out there with them now and it has given me such a big confidence boost knowing that I work with people that have them too.

  11. My hearing loss was misdiagnosed (parents told I was faking) from the age of 6-16. When I received official diagnosis at 16 not only did I learn that I had moderate hearing loss and needed hearing aids but also that my dream to join the army, everything I had wanted and worked for was impossible.
    It took a long time (20ish years) to come to terms with but I’m there now. I learnt BSL 16 years ago but through lack of use I forgot most of it. I’ve since join a group that has been amazingly helpfulness and supportive. I now regularly attend the sign group and cafe meetings but also take part in the sign choir.

  12. Hi Wayne, I’m in the denial stage at the moment. People keep telling me I’m going deaf because I have to ask them to repeat things. Sometimes I know I miss parts of conversations and then have to ask someone later what was said. I rely a lot on watching people’s lips when they are talking to get a vague idea of what they are saying. I’m 53 so guess I’m trying to avoid accepting that fact that I’m getting older and parts are starting to wear out 😂

    1. Please go and get your ears tested. I was in denial for ages, and now I’ve come out the other side, I’m so glad I got them tested. Make sure you look after yourself! x

  13. This definitely resonates with me. I am also noticing a deterioration in my hearing in one in and also had a perforation which along with 3 bones in my ear tries to repair a few years ago. Unfortunately the operation wasn’t successful and the repair collapsed. Doctors are trying to convince me to have the op again but have said it won’t improve my hearing. They have given me a
    Hearing aid to use but I don’t like the sound it gives me and find it quite painful.
    I have been brought up with deaf parents so luckily I can sign but obviously I’d still like my hearing which in some situations (big groups, noisy environments) I struggle.
    Just wanted you to know your not the only one and actually it has also helped me reading your story and the others that have commented. Thank you for letting us know your story.

  14. Reading your story dose pull on your heart string. Getting any news effect people in different ways. Only last week I found out I could be losing my sight in one eye just depends on how long it will take. I don’t think it at all has sank in yet as don’t know all the facts so just hoping for the best. You have a very good advantage as you are amazing at sign language and I love your music video. There are amazing and I look forward to watching them. I did lean sign language when I was 16 took BSL level 1 and passed done some of level 2 but that was many years ago. Like most things if u don’t use it, u loss it.
    I wish you all the best and hopefully you can wear hearing aids for many years and still be able to hear everything around u.
    X

  15. It’s not me in that boat, but my 1 year old son was born with perfect hearing. At 10 months, he was diagnosed with meningitis, and one week later, lost his hearing completely! Me and his dad we’re so scared, as we didn’t have any knowledge in sign language at all! And even though he now has cochlear implants, he still has limited hearing. Thanks to the videos you post online, me and his dad are able to sign some of his favourite songs to him, we are not perfect at it yet, but we are at a start. Thankyou for doing what you do, you are amazing!

  16. I have just been diagnosed with otosclerosis and I will need an operation in my bad ear and a hearing aid in the other one. I’m currently waiting hearing aids in both my ears. I really struggled to come to terms with have no to wear them and how bad my hearing has got. I’ve ignored my hearing deteriorating for years but with my child being young and not been able to hear everything I needed to go for them testing.
    It’s like a whole new world now been able to hear the things that I didn’t realised I couldn’t hear, traffic, birds and the rustling of the trees, but most of all my children. I’m hoping once I’ve had the surgery my hearing will improve massively. It’s good to have support for others and hear about other people’s stories, it is one of the hardest things to deal with.

  17. Never had any experience in this but wanted to show my support to you. You are a good guy and you will succeed in all you try to do! Much love xx

  18. At birth I had my hearing tested and it was not positive so I had to go back a couple of times when they told my parents I was partially deaf in both ears. As I got older I has to have hearing tests every 6 months. Sometimes it would be better than others but as i got older my hearing got worse, I had to have gromets about 3 times and I am now nearly 17 and I haven’t been for a hearing test for about 6 years. About 2 years ago I am to my senses and I thought there is a possibility I could go completely deaf so I started watching your videos Wayne and decided i will learn them.

  19. My little boy was diagnosed with glue ear in both ears 3 months ago after being tested due to his unclear speech. He is so bright and knows so much but must be struggling to hear the correct way to pronounce. He has a follow up test this week and I’m so worried for him. Luckily we go to Tiny Talk and he is absolutely amazing at signing. I am so glad I took him to these classes early. My gran thought I had “ruined” his speech by his love of signing but I dread to think what would have happened if he hadn’t had that to rely on all that time he wasn’t hearing properly. I agree everyone should learn sign language it’s the best thing we ever did.

  20. My son was about 13 years old when we were told he had a hearing problem (he had grommets twice when he was younger for glue ear) he was diagnosed with moderate to severe and had a hearing aid in his right ear but within a few years it had deteriorated and was diagnosed with severe to profound hearing loss, the hearing aids no longer made any different and he now deals with the hearing loss in his own way as he is now completely deaf in his right ear. He was having hearing tests every 6 months but now he’s nearly 18 it has gone up to 12 months. We still don’t know what caused his hearing loss despite MRI scans, we were told at the start that it could have been an inner ear infection that has killed the nerves but they can’t be certain. He doesn’t want to learn BSL but I’m currently learning to help me at work as I am a Teaching Assistant, he is quite happy and doesn’t let it bother him really.

  21. So sorry to read this, x
    You are such a strong person and I know you’ll be fine!. My kids were born profound so it’s all they’ve ever known but to have hearing then to know your losing it must be such a rollercoaster of emotions. Sending hugs your way from me and Daniella x

  22. Hey Wayne,

    First of all, I’m sorry about this news for you. I didn’t realise you have been going through this. I obviously don’t have experience of something like this but I do have a lot of experience with people who are having a tough time. My work means I meet people every day who are trying to come to terms with difficult experiences, loss, or changes to their circumstances, and the emotions that come with that. It feels so much easier to ignore or avoid because facing it is really scary and hard work, but we know in time it builds up and explodes. I see so many people who are at different stages of this journey and the type of people who make it though.

    What I’m trying to say its that you have made a fantastic brave leap with you facing it head on. It’s means you are on your way to accepting it which is massive in terms of moving forward, and not letting it affect your life more than it needs to. However hard you work there will be times it will get you down, meaning you will have to accept it over and over again! But don’t battle the emotions that brings, whether it’s fear, sadness or anger, or kick yourself for having feeling that way. Allow the emotions and accept them too.

    You’re pretty awesome you. Resilient and compassionate are a few words I use – I was telling some friends about you last night (before I even read this) and how proud I am and wishing you lived round the corner so we could go for a pint (or lemonade-whatever takes your fancy). From what i know with my work, and cos i know the person you are – if anyone can do it, it’s you.

  23. Hey, just read your story and yes I totally understand your perspective. My daughter was born with mild to moderate hearing loss after being born premature as a result of me having preeclampsia. There is also a direct link between her hearing loss and preeclampsia so I’ve spent a long time feeling guilty and that her loss is my fault…stupid I know and nothing I could have done differently.
    Anyhow…fast forward to 2019: I count my blessings everyday, I have a beautiful daughter, who is smart and articulate. We live now in New Zealand, where sign language is a recognised national language alongside English and Māori and so when children learn though song here, sign is included too. My daughter loves your work, so much so she more has two ambitions: to be a vet and a sign language singer, just like you!
    You are an inspiration and, no it may seem pretty tough and rough going at the moment, but you are an amazing individual doing fantastic work for young British people. Keep going!

  24. Ive always had perfect hearing untill 2 years ago i had a really bad cold and it constantly sounded like i was under water eveeything was muffled and sounded really horrible so i went to get a hearing test which then come back that my hearing was deteriating, ended up going to the hospital having a mri scan to see if there was any underlying problem with my ears, to be told my right ear drum is perferated slightly… so 2 years on they have given me a hearing aid to improve my hearing, 4 weeks ino wearing the aid i have become slightly more confident.

  25. I found out I have moderate hearing loss in the mid ranges when I was in my late 20s. I found out because my manager at the time noticed I was asking her to repeat things and that I couldn’t hear things everyone else could. She thought it might have been nerve damage from ear infections, which I can be prone to. Turns out it is ‘familial hearing loss’ and I had always had it. Because it’s only in the mid ranges I can hear high and low pitches just fine. But vocal ranges are really not so good. I tried hearing aids but they amplify everything and I also suffer from chronic migraines so they don’t really help. I really rely on lip reading. I always have but now I know I do. For a long time it was a sensitive subject for me. It feels like it is getting worse but getting another appointment is really hard. I’m learning BSL and find it liberating. But even though my daughter is learning too, no one else is (My sister in law is deaf but we don’t get together much). So I get along with subtitles and lip reading. And I guess I’m still a bit sensitive about it because people who should know better still make insensitive jokes and turn away when they talk or hide their mouths or mumble. And it hurts. But I just try to get along. I try to remind myself that every smile on my life counts and go with that.

  26. Over the past few months I realised I was asking people to repeat things regularly and get like everyone was always muffled. After much encouragement, I went and had a hearing test. Significant hearing loss. They’re not really sure why, probably an ear infection that was never picked up on. I’ve spent many weeks trying to convince myself that wearing a hearing aid isn’t the end of the world. Reading your story has given me a little bit more confidence to go out in them and not suffer and try to read people’s lips! I teach a little boy who had profound deafness and so as a class we learn sign language to support inclusion. I think all schools should adopt this policy.
    Thank you!

  27. Hello .. I’ve just read this post.. firstly I’m very sorry for you long term news and can identify with your fears and emotions.. I was born with normal hearing and no apparent problems.. I began to suffer with many reoccurring infections and glue ear at the young age of 3 had various operations to remove tonsils adenoids and correct a deviated septum by the time I was in junior school I had missed a lot and struggled to keep up.. I had grommets a few times including myringoplasty to replace the perforations in the ear drums on both ears… by then I had chronic ear disease however it was not diagnosed correctly so I continued to suffer until I was 30 I was sent to a consultant Mr George Brooks who did a radical Mastoidectomy the hearing bones were to be replaced during reconstruction the following year but due to the amount of scar tissue the numerous attempts and very skilled hands were never successful.. from this stage we gave up my hearing was now moderately low in the L and Severely low in the R.. I continued to travel to the Royal National ENT in London for yearly appointments I asked about hearing aids but was told that due to my chronic ear condition I couldn’t wear a device in my ear then 10 years later I was very fortunate to be offered a Ba Ha .. Bone anchored hearing device. This involved more surgery but gave me back so much confidence in so many ways after such a long time.. things are never the same I have lots of infection and glue ear still.. I know that in time I may lose my hearing totally and I dread the day.. but for now I would love to meet more people in my position, keen to learn sign and help others .. please point me in the direction best wishes 👍 Tracy

  28. Both my daughters (age 11 and 14) are deaf. They were born hearing but have a progressive loss so it has deteriorated over the years. My youngest has hearing aids and my eldest has one hearing aid and recently had surgery for a cochlear implant. They are both on a BSL Level one course. At the beginning I found it so hard not knowing when their hearing would go but over time it’s become so much easier. They deal amazingly with whatever comes their way so I try and have the same mind set although sometimes it’s hard. Having the deaf links you have and the support of family and friends is all you need. Good luck on your journey, everything will be ok. X

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