The Lifelong Process of Accepting My Hearing Loss

I’m 43 years old. I have been steadily losing my hearing since I was 5 and have been wearing hearing aids on-and-off for most of that time. Here’s my story:

At the age of 5 my parents took me to the local doctor because I was sometimes not responding to them when they talked to me. The doctor referred me to the ENT department of the local hospital. I was diagnosed with a sensorineural hearing loss and came away with a pair of BTE (behind the ear) hearing aids that had full-shell molds. The piece of the aid that went behind my ear was pretty big and bulky, and the bit in my ear took up the whole space and pressed against the sides. I hated it and didn’t want to wear it. As this was 30 or so years ago, the hearing aid was an analog device and did not have the sound quality and speech recognition that today’s devices do — it basically just made everything louder.

My parents made me wear the aids to school, and I do remember wearing them in class, but my mum said years later that I didn’t wear them at school for long. I used to wear them up to the school gate and then take them off for the day, only to put them back in at home time so Mum didn’t realize. I remember being teased by the other kids about them — nothing sustained or evil, just the usual level of joshing kids do with each other. Some other kids got teased for being overweight, having ginger hair or other reasons; I got it for my hearing loss. To be honest, I don’t remember it bothering me that much.

After a short while I stopped wearing the hearing aids. I guess even though I wasn’t too bothered about teasing I still wanted to fit in, be “normal” and not stick out. I left education at 18 and I didn’t wear my hearing aids at all after that initial period. All through school and college I sat near the front of the class so I could hear the teacher. During those years my hearing was getting progressively worse. What started off as a minor loss became a moderate one, and as each year passed it became more and more difficult to hear in noise, in groups and when people were not directly in front of me.

During my early teens my parents took me to a private hearing aid dispenser and I got a pair of small in the ear (ITE) hearing aids that were by no means invisible, but were much less noticeable than the old hospital ones. They were also a lot better at blocking out noise and allowing me to hear. By now, I was a teenager and the need to be cool and to fit in with the group was way more powerful than the need to hear, so I didn’t wear any hearing aids, despite it starting to become a real problem to hear every day.

By the age of 17 I was missing quite a lot of what people were saying, so I was trying to cope in different ways. Lip-reading and watching body language of the speaker worked incredibly well for me. Over the years I’ve become very adept at lip-reading, and when you watch someone’s body language quite closely it is surprising how much you can understand about the meaning and intention of what they are saying. I also did things that were less useful. I laughed when someone finished saying something I didn’t hear, I changed the subject, if someone told me something and then a while later asked me about it I would say I’d forgotten about it instead of saying I never heard it. Often, rather than asking someone to repeat themselves I would just respond to what I thought they’d said. Their laughter when I said something that didn’t make sense was crushing.

Looking back, I realize I started to withdraw from group conversations quite a bit, simply because it was easier to do that than try to follow them. I can remember the dread of being in a group and worrying someone might turn to me and say something like, “so what do you think, Steve?” to which my only answer could have been, “eh…I have no idea what we are talking about.”

I guess some people who knew me back then must have thought I was weird, rude or “stupid.” I must have answered some people with some things that were totally out of context. I must have not heard a lot of people and misheard a lot more. I also wonder if I would have gotten better grades at school if I’d worn my hearing aids. The grades I left with were decent, but could I have done much better?

At about the age of 19 I knew the game was up. I needed hearing aids. I started to wear one hearing aid, an ITE device, and I wore a hat to hide it. During this time I built up an awesome collection of hats! Wearing a hearing aid made so much difference to how much I could hear, but I have hearing loss in both ears and needed to be wearing two aids. Wearing just the one is like getting a pair of spectacles and removing one of the lenses. I continued with that setup for some time, lots of hat wearing and one hearing aid, which worked OK but I was still not really accepting my hearing loss and hearing aids. I was still trying to hide them and deny my condition.

Some time after that I finally gave in and started wearing two hearing aids. I’ve owned numerous pairs since then and have seen hearing aid technology advance by leaps and bounds. Not only are they now much better at allowing me to hear speech in noise, they can stream music from my Android phone, stream audio from my iPad, allow me to take phone calls directly in my aids and much more.

It is still a battle though; as hearing aid technology gets better, my hearing gets worse. My hearing loss has now degraded to the point that it is classified as a severe hearing loss, which basically means I cannot hear anything without my aids. Even though I’ve been wearing aids almost of all my life it still amazes me that I can go from hearing almost nothing to being able to hear pretty comfortably most of the time with my hearing aids.

It is common for people with a sensorineural hearing loss to gradually lose more hearing over time. It’s known as a progressive hearing loss. It is also common for us to have tinnitus, which I do, mostly in my right ear. Nobody has been able to full understand tinnitus or find a cure for it. The ringing and buzzing in my right ear is pretty strong and is there constantly, although wearing hearing aids does mask the noise out and I only really notice it when I’m not wearing them. Another good reason to wear hearing aids!

Tinnitus is a condition of the brain; it is believed that the brain is in some way trying to compensate for the lack of sounds coming though the ear. My tinnitus gets worse when I think about it. It has flared up while I am writing this, but when I stop writing this piece and do something else it will die down. Luckily it doesn’t bother me much; I’ve learned to ignore the noise and it doesn’t stop me from sleeping. I count myself lucky as tinnitus can be torture for some people.

So that’s where I am today, trying to balance out improving hearing aid technology against my degrading ability to hear. Wondering when, or if, I will need to use a cochlear implant instead of a hearing aid, whether there might be a cure for hearing loss someday (stem cell research looks promising) or whether hearing aid technology will continue to improve enough. As I get older, age-related hearing loss is going to quicken the decline and things are going to get tougher.

I wonder: would my life be any different if I didn’t have a hearing loss? If you had asked me that 20 years ago, I would have said yes, and would probably have told you all the things I couldn’t do because I couldn’t hear so well. But now, the answer is a definite no. I have a lovely family, like my home, have traveled to where I wanted to go and have been employed in jobs I loved. I realize now that it was my own negative thoughts, my own worries that may have held me back, not my hearing loss. I should have worn hearing aids at an earlier age, should have embraced it and told everyone I couldn’t hear so well. It turns out no one is really bothered about it; it was just my own concerns. So I don’t think my life today would be any different if I had perfect hearing, but I could have made the journey a lot easier on myself.

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Thinkstock photo by Bet Noire.