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You Are Not Alone

When I was first told I needed a hearing aid, the last thing I wanted was for other people to know about it. I felt like I was the only person in the world with this ‘problem’ and that it was a private matter and not something I wished to discuss with other people. I now wonder if, because I discovered my deafness in a hospital setting, that’s why I felt that way about it: it was a medical diagnosis and therefore private, right?

Alone

I wonder if I’d had my hearing tested and been told I needed a hearing aid at an independent dispenser’s or an opticians with a hearing care centre, if I would have felt differently about the whole experience. (I may still have been advised to go to hospital later to discuss the prognosis but perhaps the initial experience of being told I needed a hearing aid might not have felt so ‘medicalised’.) Perhaps it would have felt more like being told I needed glasses, which was easy enough to come to terms with, as I recall.

Anyway, in the beginning, I couldn’t get used to the ‘in the ear’ hearing aid I’d been given at the hospital: it was so uncomfortable, made my ear and jaw sore and the volume was ‘deafening’ and it gave me terrible pains in my head after just a few hours of use. I consigned it to a drawer and instead embarked upon lip-reading classes. I remember that my goal was to become so proficient at lip-reading that nobody would know I had hearing loss. (I think I’d seen one too many spy movies with people looking through binoculars and reporting what was being said!)

My plan worked well for a time but then my hearing loss got a lot greater and I had to go and have another hearing test.

The student who announced the results of my hearing test did not realise the impact of what she was saying to me when she told me the hearing loss had begun in the other ear. She said it so matter of factly — but to me, I saw it as the ‘beginning of the end’. I needed hearing aids — not just one but TWO, and I was going slowly deaf in both ears. I was heart-broken.

The hospital offered me another in-the-ear aid but after the pain I’d had with the first one, I couldn’t face it. I chose to go private. When the audiologist told me I needed BTEs, again I was upset. “They’re just for really deaf people right? Surely I didn’t need those? I worried they’d be really noticeable but actually, I got the ‘open ear fit’ (the plastic tips have air holes in them) and they were light, discreet, and I honestly couldn’t always feel them. It was a revelation after having the ‘ear full’ experience.

open domes

When I did finally get these discreet hearing aids, I felt much less self-conscious about them and I started to tell a few people that I had hearing difficulties and when I did, I was amazed at how often people’s replies were that they were deaf in one ear or one of their relatives or their best friend. People at work told me about other people at work who had hearing aids and I’d never guessed (and why should I?). But it was far more common than I’d ever realised. I even showed my hearing aids to a couple of people and recommended my audiologist when it turned out they too had hearing loss. (I should have been on commission!)

I started to feel OK about having hearing aids, and the more people I met who also had hearing problems, the better I felt. Knowing other people trundle along through life with the same problems as you helps to put it all into perspective. Once the dust settles, you just ‘get on with it’, don’t you?

I’m Not Going on Vacation

I don’t know if this is peculiar to where I live but here professionals tend to have a habit of talking about people’s experiences of hearing loss as a ‘journey’.

Hearing Loss Luggage

According to the Oxford dictionaries, a journey is ‘an act of travelling from one place to another’. To me, a ‘journey’ involves setting out with the aim of reaching a destination. But that does not fit with my experience of deafness. I didn’t choose a destination or route and I certainly didn’t buy a ticket.

If life’s a ‘journey’, then the destination is the coffin, is it not? In this metaphor, having hearing loss is not the journey itself — rather it’s a heavy and somewhat cumbersome piece of luggage which some of us have to carry around. Sometimes, there may be a luggage trolley (hearing aid or other device) to make things easier and on occasion, someone might carry the luggage for us (watching something with the subtitles), meaning someone else has done the hard work for us, but, for the majority of us with hearing loss, we’ll be ‘carrying it’ with us for life.

And that’s fine. Everyone has something, don’t they? High blood pressure or a bad back. But do their doctors refer to those people’s conditions as ‘blood pressure marathon’ or a ‘bad back ramble’?

In the same way the media likes the phrase ‘battle with cancer’, so health professionals like a ‘hearing loss journey’.

Perhaps the ‘hearing loss journey’ phrase came about because of professionals studying the Kübler-Ross ‘five stages of grief’ which is also referred to as a ‘journey’, but is that enough for the phrase ‘hearing loss journey’ to have caught on?

Or is it something to do with the whole ‘pathway of care’ way of thinking and speaking about patients? Pathways, journeys… us deafies are clearly going somewhere. Perhaps at some point the professionals will let us know where they think we’re heading: that way, we’ll know what to pack!

So, this is a plea to the professionals out there: becoming deafened isn’t a journey with a destination. We haven’t bought a ticket, so please don’t talk about ‘journeys’: we’re adjusting to living with a disability, not going on vacation.