Coping with hearing loss in a hearing world





























Tania's story

Tania Le Marinel is a self-employed management coach who wears two behind-the-ear digital hearing aids and has a rare form of moderate low-level sensorineural hearing loss. 

How it all began

I donít really remember at what point in my life I finally realised I had hearing loss Ö it crept up on me so gradually it just became part of Ďnormalí life and I can only wistfully remember now what life used to be like when I could hear a pin drop.

Hearing loss is a hidden disability. People look at you and canít see anything wrong so naturally they assume you have the same bat-like hearing that they do. If only! Iíve found out people thought I was stand-offish in the past because I ignored them when they spoke to me. How could I possibly know I was offending somebody if I didnít even know theyíd spoken to me?

My journey into the world of hearing loss truly began when I got a new job as a project manager in my 30ís, working with large groups of men on a noisy building site. My boss had a very deep, quiet voice and I struggled to hear him in meetings. I was struggling a lot by then.

So, after several years of trying to dodge the issue I finally took my courage in both hands and went to my GP who referred me to a specialist at the local hospital. Iíll never forget sitting in that waiting room, that feeling of dread and nervousness, hoping against hope that it was just ears full of wax, that theyíd pooh-pooh my concerns and send me home. Alas, it was not to be. The specialist carried out some tests and then asked the six-million dollar question: what do you do for a living? When I told him, he said: ďwell youíll have to give that up. You have a very rare form of low-frequency sensorineural hearing loss which means you canít hear deep or low sounds. Get a job in research or something because youíre losing your hearing.Ē

POW, WHAM, right between the eyes, not a jot of sympathy, nobody outside in the waiting room to give me information and support about what my diagnosis meant. My world tilted on its axis and would never be the same again. And no itís not an exaggeration, I was devastated. Sensorineural? WTF is that?

And so began a long journey of trying to cope with my diagnosis. Breaking the news to my husband was bad enough but the fear of losing my hearing was nearly as bad as the diagnosis itself.

How I tried to cope (with varying degrees of success)

So I developed a whole range of coping strategies. First of all, I hid it. I didnít want anybody to know because I couldnít bear the thought of talking about it Ė how could I cope with other peopleís reactions when I couldnít cope with my own? Anyway, every time I thought about it I wanted to burst into tears.

A few months later I was prescribed and given an NHS hearing aid. I walked out of the hospital and nearly hit the ground when an aircraft flew overhead Ė it sounded like it was going to land on me in the car park Ė so loud! Iíd forgotten the sound of birds tweeting in the trees, the sound of raindrops on my umbrella, the tick of the clock in the kitchen, the rustle of my clothes as I walked. It was a revelation! It made a big difference but it didnít bring back my hearing Ė it only helped with some situations, and made no difference at all in others.

By this time Iíd moved into self-employment as a management coach and trainer. I began having trouble hearing on the phone with clients, causing me huge problems as telephone coaching was a big part of my work. My strategy was to ask my secretary to screen calls for me Ė it worked for a while but it wasnít solving the problem. I then got a second hearing aid which also helped but still didnít solve the telephone problems. I began to avoid answering the phone at all, using emails, text messages and begging other people to listen to my voicemail messages.

What did I do about it?

In desperation, I started searching websites for equipment that would help me. I trialled dozens of different telephones, hearing loops, amplifiers and streamers but nothing seemed to help and they all got sent back so itís fair to say I eventually became phone-phobic.

Then I discovered there was help out there for people like me from charities such as Action on Hearing Loss and Hearing Link. I found out by surfing the net Ė nobody ever told me Ė and started using online forums to ask questions about my hearing loss. I struggled on and came up with new coping strategies Ė sitting in the front row at seminars, avoiding loud places (like noisy pubs), laughing when everybody else laughed (even if I didnít hear the joke), smiling and nodding when people asked me a question (because they got frustrated with me if I asked them to repeat it), sitting where I could see somebodyís face when they talked Ö I was actually learning to lip-read without even realising it. All normal strategies but I still didnít know how to do it better.

I became an expert on mobile phone technology and hearing loops, but still found no solution. At this point I began to get angry: why was there no help or support available for people in my situation? And getting angry was the beginning of my recovery because it spurred me into action. I realised hiding my disability (even to the extent of growing my hair long to cover my hearing aids) was doing me no favours. Hiding my disability was actually holding me back and causing me even more problems. My husband (bless him) kept telling me that the problem was between my ears, not my ears themselves!

So I began to take several vital steps forward. First, I started fund-raising for Action on Hearing Loss and Hearing Dogs for Deaf People. I gradually started telling people about my hearing loss. It felt akin to admitting I was an alcoholic Ö Hi, Iím Tania and I have hearing loss! I sometimes wonder why hearing loss is so difficult for people to admit and why there is still this stigma about hearing aids Ö after all, we canít help it if our ears donít work properly!

I learned I also have something called Ďrecruitmentí, where the louder the noise, the more distorted the sounds I hear. So for all those people who think shouting is the answer: please donít do it, it hurts! It took me eight years to accidentally find that vital piece of information about my hearing loss!

I began scouring websites, hoovering up information like a truffle hound. I learned more about my diagnosis, followed new research, watched new product launches with hungry eyes, determined to overcome my reticence about my hearing loss. I shared my story with more people and discovered a whole well of support that I hadnít even realised was there. Some people hadnít noticed my hearing loss at all Ė usually women. Men, usually those with the deepest voices, had noticed but never said anything. Another revelation Ö Iíd been hiding something that people had already seen and ignored!

How I finally broke through the pain barrier

Then I discovered a website that really blew my mind:  Pimp my Hearing Aids. Here was a whole group of people with hearing loss and Ďloud and proudí about it, decorating hearing aids in all manner of sparkles, patterns, images and designs. They were doing the opposite to me; instead of hiding it they were proclaiming it as loudly as they could. The axis of my world shifted again, but in a good way this time.

And so, to bring things up to date, I now contribute to on-line forums, chat online to other hard-of-hearing people, sign petitions and campaign for equal treatment for those with hearing loss. I play a bigger part in conversations and have begun to start fighting back against the accepted wisdom that hearing loss is something to hide. In other words, I have finally come out of the disability Ďclosetí.

I make every effort not to hide it any more, apologise for it, or duck and dive to pretend I can hear when I actually canít. Iíve become an advocate for those with hearing loss, missing no opportunity to educate people when Iím out and about, socially or professionally. I can actually spot somebody in a room who has hearing loss Ė I see them adopting the same embarrassed coping strategies that I used to use, trying to hide their hearing loss as though itís something to be ashamed about (just like I used to do).

But no more, Soundz Off is the next step in my personal journey to learn how to cope better with hearing loss. I hope it inspires other people to follow in my footsteps and come out of their own 'disability closet' with confidence, armed with the information and support they need to live successfully with hearing loss in a hearing world.

Good luck!