Visual and hearing impairments
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hearing loss

pafrapafra Member Posts: 5 Listener
My disabilities are many but signed up for fairly severe hearing loss. So... Anyone in this category is welcome to message. 


  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @pafra

    Good Evening and Welcome😃😃😃

    Here’s some info below for you:

    Please please let me know if if you need any further info?????

  • pafrapafra Member Posts: 5 Listener
    Thanks Steve. I've no idea. Only that I'm trying desperately to reach out due to my many problems, illnesses and disabilities  I've recently involved Age Uk and social services. Perhaps I'll need legal advice too! I only know that I'm utterly floundering and cannot manage any of my many quite serious issues. None at all
    Feeling very alone and just reaching out particularly as my worsening hearing leaves me unable to hear on my phone! 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,619 Disability Gamechanger
    Hi @pafra welcome to the community! I have hearing difficulties too. It can get very lonely!
    Disability Gamechanger - 2019
  • pafrapafra Member Posts: 5 Listener
    Yes Ami. It can be so lonely. I've particularly noticed it in recent times. Others really don't understand, I've sometmes been shouted at, even pushed over!
    Have you had hearing probs all your life? Mine began age 13 but got progressively worse over the years. 2 ops so nothing more can be done. Doesn't help the isolation! What's your cause? Mine is otosclerosis  
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,619 Disability Gamechanger
    Mine began after Christmas 2016, a few weeks after a cold. Consultants still don't know the cause
    Disability Gamechanger - 2019
  • pafrapafra Member Posts: 5 Listener
    Ami..  I've heard of this. It often remains a mystery. In some ways this is worse because it's so immediate and unexpected. I don't know how bad your hearing loss is. A friend of mine was born that way. No, I don't envy him but he had much time to learn lipreading skills. Me, I'm useless at it. Even tried classes!! I've always admired him for obtaining an honours university degree in spite of this. However, the social isolation has I think  left personality problems.
    I've pretended for years. Pros and cons... Perhaps accepted better by others but then even less comprehension that I've often no idea what's going on! 
    Thinking of wearing a placard saying that direct speech is needed and sometimes pointedly putting it on!  I find that people's attention span to special needs is rather brief! What are your experiences? It's so easy to become more isolated because of this! 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,619 Disability Gamechanger
    I can hear tones of voices but I struggle to understand what people are saying, especially long sentences as they just morph into one word. I know I have tinnitus which is worsened when I get very stressed,

    I have tried 2 different hearing aids and 2 amplifiers, all of which just made the noises I already hear louder.

    It infuriates me when people speak to me in such a degrading tone - I feel so belittled.

    I did try a lip-reading class too but because of my central vision loss, it makes it more difficult.

    As I have some level of hearing, they won't consider cochlear implants. I'm currently waiting for an appointment with a ENT to try a hearing aid with a small device which reduces the tinnitus but I'm not holding out much hope.

    I do have a tablet which people use to communicate with me via the speech to text function. But nearly everyone refuses to use it or even try it. It is so frustrating. I miss being able to have a proper conversation
    Disability Gamechanger - 2019
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @pafra

    I do I that everything is good with you today???

    I am totally deaf in my left eye due to my Stroke in 1998.

    Since then I have been given hearing aids but with little to no benefit.

  • pafrapafra Member Posts: 5 Listener
    Ami, it seems like your hearing loss is pretty bad. 
    As for cochlear implants, well I'd imagine that to be pretty extreme anyway. From what I understand, it's only suitable if there's nothing to lose anyway since a person is otherwise completely deaf. 
    I haven't heard of tablet communication but can imagine that most people can't be bothered! Empathy with hearing disabilities isn't that strong with most people. I understand it even. It takes much more time and effort! Leaves the sufferer really frustrated doesn't it?
    Yes, tinnitus can be horrendous. I once joined a tinnitus help group via my hospital's hearing counsellor. Some in that group were in an awful state. Anyway, I left after some person gave a talk regarding some idiot professor who'd decided that tinnitus was all in the head!!!! These days, I'd probably challenge that concept and have much to say! Still, I've become a lot more vociferous these days... when that is, I can be bothered. Always a strain when we can't properly hear any replies!
    I'm waiting for counselling on how to cope with my huge resentment  not against anyone particularly  just about circumstances. Like you it seems, there are other health issues. Life really isn't fair! 
    Lots of luck that your ENT appointment shows a good result. Anything to help! No, I've learned not to hope for much either! 
    Sometimes, I get the most appalling condescension from others who seem to think that they know and understand. Mostly they get a deliberately boring technical lecture from me with just as much condescension too! 
    I do try not to feel hurt, or to get irritated too much. Sometimes that's hard. 
    Honestly, I'm truly thinking of making a placard to wear saying 'direct speech essential' when people all too frequently forget and do things such as speak with their backs to you! 
    Actually, I really do understand other's forgetfulness or not wanting to make the effort. I really don't care much, they don't have to spend each and every day having to live with this. Mostly though, others have decided that their problems whatever they are, are equally difficult! So.... back to isolation or putting up with all this! 
    Still, I push people sometimes, when I can be bothered. 
    Again, I hope ENT can be at least of some help. Anything to alleviate some of the stress eh? 

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,619 Disability Gamechanger
    You're absolutely right!  The past few days I have really been struggling with a bad mindset in regards to my hearing. Majority of people don't even try and talk to me anymore. It's so horrible :(

    Thank you @pafra I really hope so too! If you ever need to talk, please send me a message :)
    Disability Gamechanger - 2019
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