Things people don’t understand about hearing loss: number three…..the pain of it

21685279 - womanAnother thing people don’t understand about severe hearing loss; I don’t think they understand the pain of it.

I’ve written before about how helpful I found some counselling sessions in 2017, when things were at their worst.  The most helpful thing the counsellor did, in hindsight, was to give a name to my emotions.  “I’m hearing a lot of grief” she said.  Naming it was powerful.  Yes, it was grief.  It was a very profound grief, akin to losing someone very close to me, because indeed I had.  I had lost a part of myself.  Not just my hearing but my confidence, my personality…….quite a lot of “me”, in fact.

I’m writing about this again because, now that I’m able to look back from such a vastly better place, it seems even clearer what was going on.  Now that I’ve got “me” back and have picked up the life I was happily living before 2017 the pain of that period seems both a long time ago and, simultaneously, something I still want to write about and understand.

Many aspects of deafness are invisible to the observer and it can seem to other people that nothing much is wrong.  Of course, to me, everything was wrong.

The fact that I couldn’t talk easily to my own husband in our own house was “wrong”.

The fact that I was having to give up some of the things I’d most loved doing was “wrong”.

The fact that I was aware of having become a very different person was “wrong”.  I became quiet and withdrawn.  I’ve always been comfortable in my own company but I came to positively yearn to be on my own.  If I was out walking with the dog or pottering around the house doing stuff that didn’t involve my ears things felt OK; I could kid myself that things were relatively normal.  But when I started to try to engage with the world I’d be confronted, devastatingly, with the fact that things were far from right.  It was all very, very sad (massive understatement) and I was sinking.

Did other people realise?  Other than Nigel of course.  He saw my desperation every day.  Indeed he was affected as much as I was; his wife had become a different person.  He was my rock, and I depended on him, but life for him was just as hard.

Nobody else saw quite the full extent of the problem, partly because I had my best “brave face” on.  I didn’t want to admit how bad it had got.  I was horrified at the thought that people might feel pity.

Actually, I suspect that people I didn’t know very well just accepted me as a quiet sort of person who kept herself to herself.  Why should they think anything else?  That’s who I was then.  Of course, there’s nothing wrong with being that person (quiet, introverted) if that’s who you genuinely are, but it wasn’t who I was.  That was the pain of it.

As I said in the film, I felt like I’d gone over a precipice.  I was desperately clinging on to the life I was used to living, but it was slipping away.  I was falling and it was very, very frightening.

A lot of people don’t “get” this, about deafness. They can’t “see” the pain of it in the same way that they can “see” the pain of some other disabilities.  I can understand why, in a way, particularly when a mild hearing loss gradually shades into something more and more serious.  How would an observer know that something that used to be a minor irritation has become such a massive loss? They can’t see that for themselves.

But also…….in part they don’t get it because we don’t tell them.  As I said earlier, I had my best brave face on.  I was carrying on as best I could.  My pride kept my head up and my tears in.  It all makes sense as a strategy for keeping going (to a point) but I do think that, somehow, we should do more to explain all this pain to the hearing world.  Otherwise, how will they ever understand?


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12 thoughts on “Things people don’t understand about hearing loss: number three…..the pain of it

  1. …Also, what a great post! I remember when I first had my sudden hearing loss and I spoke to you through my blog. You told me that I need to grieve. this is actually one of the best pieces of advice I’ve had since my hearing loss. Yes, it is a loss, and so of course we need to grieve. I look back to how I also lost a big part of myself. Even though i could still hear in my right ear, i also found myself not wanting to interact and engage with the world, and it was just so difficult.
    Also, so great to mention Nigel. I know my boyfriend found my hearing loss difficult, as – like you said – his girlfriend had changed. I wans’t my usual happy self. I used to worry about him worrying about me! I wished he could have been given some support too.
    Anyway, it’s great that we are both in a more positive place now and are able to reflect on these experiences.
    Thank you Vera for sharing your thoughts

  2. Very well written Vera. Unfortunately when explaining the problems to hearing people they feel helpless when there is not much they can do to alleviate the problems. I found that after a few conversations with my hearing family that it is up to me to to decide how I will deal with it. I am not yet at the stage where I can be considered for a CI so have to put up with my current situation. I do find it exhausting to socialise and rely on my nearest and dearest to fill me in on missing bits of the conversation which they sometimes forget to do!

    1. Hello Pat. I guess as long as those hearing people really DO understand how hard it is I can fully sympathise with their frustration in not being able to do much to help. But so often they DON’T understand how hard it is, in my experience, and I find that difficult.
      All best wishes.

  3. Thank you Vera for sharing so openly about your grief. After 10 years of severe hearing loss I still feel grief about the things that I have lost. I have never been an overly confident and outgoing person and it is very tempting to withdraw into myself. I am fortunate to have a very supportive (and forbearing) partner and loving and supportive family, but I still occasionally have sessions when I withdraw, feel sorry for myself and have a good cry! Your posts help to keep me on track and remind me that I am not alone in this.

  4. It’s very true Vera and Heather but I always feel people would simply lose patience with me if I went on about it! I feel it’s my problem to solve – rightly or wrongly! I do now feel for my partner when he can’t say something to me in a small kitchen without having to reposition himself and repeat things! He’s very patient really and I long to relieve him of some of this when I hopefully get my CI! I suppose I feel a bit of a burden now and I’ve been looking at activities I would have tried before but no longer want to battle with and think – once I get my CI I can do this again! Or I can then can try this new activity! I tend not to dwell on any of this or talk about it because it’s too depressing and I’m a positive person. But I can really only do this by ignoring the affects to a large extent – like you Vera – from the safety of having a CI – if and when I get there, I think I’ll be able to look back on all this much more clearly and acknowledge just how much of a limitation my loss of hearing has now become! Thanks for voicing it for us Vera.

  5. I think it’s hard to show the vulnerable side because I feel we are conditioned to masking the effects of hearing loss and trying to carry on in order to prove we are still competent at our jobs, to prove we are still valuable members of society. The stereotypical deaf person is old and somewhat “past it,” an object of fun and ridicule. It also takes an awful lot for us to admit the devastating effect it is having on relationships and if you’re an out going person, as indeed I am, that’s too painful to think about. I am now much more comfortable keeping myself to myself more, seeing one friend at a time, but it’s not really acceptance as when I dip my toe into my old life, I miss it so much! Don’t see how we solve this though. Glad your CI has given you so much of “you” back!

    1. Hello Heather. Yes, putting one foot in front of the other and keeping going forward (somehow!) felt like the only viable strategy. It WAS the only viable strategy until I was lucky enough to have a technological rescue. Now I’m trying to find a balance between knowing that’s why people keep the pain under wraps and telling people (hearing people) about that pain – because they need to know and I feel able to tell them now. Hope that makes sense. Very best wishes. Vera.

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