I’ve lived with tinnitus for so long now that if I heard silence, I think it would be weird.Nicky, Finance Officer
When you’re growing up, you assume how you view the world is how everyone views the world. I used to work in a primary school and worked with children with a range of additional needs. Children who grew up with dyslexia and not knowing what it meant, would assume the letters moving around the page was normal. Once they received a diagnosis and were provided the extra help they needed, it was amazing to see their quality of life improve. That’s how I felt when I was finally diagnosed with tinnitus.
I first experienced hearing loss when I was six years old. Leading up to that, I had suffered with terrible earaches – I used to cuddle up with my dad and cry my eyes out. When sitting in class one day, I didn’t realise the teacher was stood next to me while I was looking out the window. When I did see her, it looked like she was shouting, but there was no sound. The next thing I remember, which happened to be sixth months later, a tuning fork being placed against my head and only hearing the sound it made very faintly. Being a child, I adapted and tried to cope.
It was only when I reached my later teenage years that I was referred for hearing aids. During my appointment with the specialist, I mentioned that I had a constant noise in my ear. At that point, the specialist said, “we can’t do anything about that” and abruptly ended the appointment. I was in total shock. I was being honest with him about what I was dealing with every day, and yet it was brushed aside. The rejection of this meant I didn’t seek professional help for a long time and had to cope with what I now know is tinnitus, by myself.
Having tinnitus for me means there is a constant hiss that is always there. I have learnt to ignore it, but then every so often on top of that I can hear a sudden higher pitch, Morse code or squeak noise. They can come on at any time, in addition to the hiss that is already constantly in my ears. If I focus on the things that I’m doing I can try to ignore it, but it’s always there. It almost becomes a friend, because otherwise it would drive me crazy!
I’ve lived with tinnitus for so long now that if I heard silence, I think it would be weird. You know how people say the silence is deafening? I wouldn’t know what silence is because I’ve never heard it. I’ve always had the noise.
It was only in 2009 that my husband convinced me to try again for an appointment for my hearing loss. I asked him to come with me, and I was so nervous that I was going to be called a fraud; so much so that I didn’t mention ‘tinnitus’ to the doctor. I sat in the booth with the headphones on and pressed the button every time I heard a sound. I was near to tears because I could hear the sounds, and surely if I was being tested for deafness, I wouldn’t be able to hear them? I was sent back to see the consultant who looked at the results and told me what I had. “You have something called cookie bites, and you have it in both ears. How long have you had this issue with your hearing?”
At that point I did cry, with relief, and told him about my experience. My husband also explained why he had pushed me to try another appointment, because I was mishearing things or not hearing them at all. As a result of this appointment, I finally received hearing aids. They reduce the volume of the tinnitus and increase the volume of voices. It’s not a full fix, but so much better.
After being dismissed by people in the past, such as that first disastrous appointment, it led to me not asking for help in my daily life. When I was successful in getting hearing aids, I found out about other adjustments that can really help me – for example, connecting them to my phone to aid calls. I was blown away; knowing there are adjustments and support mechanisms that I can implement has been so valuable.
I still don’t know everything about tinnitus, and I’m always fascinated to learn more. Once on holiday in Gibraltar, I met a surgeon who was performing operations on people’s ears. I told him about my experience, and he told me because I was hearing a noise in both my ears, it was actually coming from my brain. I was taken aback, as I’ve always assumed it must be in your ears, but in some cases, it can be a result of the messages travelling between your ears and brain.
Finally receiving confirmation of my tinnitus and getting hearing aids as a result means I can relate to the children I used to work with. The help all children need is so different, but once you figure out what works for a specific child, the tailored help you can provide them is a feeling like no other. That second appointment was that moment for me.