Living with Tinnitus and Hyperacusis

This is my very first post on my new blog. I thought I would write about how Tinnitus & Hyperacusis affect my daily life. From everyday situations that become impossible to peoples unpleasant reactions because they either do not understand or they just think I am being awkward. First of all, for those of you who do not know what these conditions are, I will briefly explain.

TINNITUS

Tinnitus is a noise that can only be heard inside an individuals own head and has no external source. The noise can vary from buzzing, hissing, music, high pitched constant ringing etc. Tinnitus can be experienced by most people at some point in their life after exposure to loud noise but usually comes and goes. For an unlucky few, tinnitus can start and never go away. A few common causes of tinnitus are exposure to loud noise, hearing loss, head injury, chemotherapy and even some medications. I myself have a constant high pitched noise in my head. I have had it for a few years and think it started due to exposure to loud music when I was working in a bar / nightclub aged  22/23.

HYPERACUSIS

Hyperacusis is an extreme sensitivity to noise. This means that sound usually causes pain for the individual who has the condition. Even everyday sounds that normal people would not even notice can cause pain and discomfort to the individual suffering with the condition. As you can imagine, hyperacusis can make life quite difficult as there is sound literally everywhere, even in our homes. I developed hyperacusis probably about a year after I first developed tinnitus. Maybe it was a result of still exposing myself to sound in my job as I had never heard of hyperacusis at that time and didn’t know that it could develop after getting tinnitus and continuing to be around loud music.

EVERYDAY LIFE STRUGGLES

So what I really crave is being inside my house where I can control the noise levels, most of the time anyways. That is my safe space. However, spending my life in a house would be no life at all. So when I do push myself to go out it can be a struggle. I notice things normal people don’t even notice. How loud the music is in shops, kids screaming, a sea of people talking, shop announcements, tills beeping. I would say that the whole time I am out of the house I am in some form of pain and I know that I will suffer more more when I get home because I have been exposed to noise. So sometimes just going shopping can take me a few days or even a week to even feel like I can face it. Some people might consider my need to avoid noise as me being lazy but when you’ve had so much pain for years then sometimes you just get tired and can’t face it as often and just feel like hiding in silence so you can have a break from the pain but I can never escape the eternal noise. Some days I even put off making food for myself as I don’t want to hear the noise of the oven or a microwave on a really bad day. I’m no longer able to listen to music and enjoy it like everyone else does as it just hurts my ears.

Sometimes when people are talking to me I’m just hoping they will shut up really soon because the volume or pitch of their voice is hurting my ears. It is really hard for me concentrate because of my conditions and this can lead to me not always remembering stuff that people tell me or not taking in information as easily when reading stuff. Everyday life can be quite tricky for me as both of my conditions crave opposite remedies. People with Tinnitus often crave noise to mask the internal sound whereas people with hyperacusis crave silence as noise is painful. So as you can imagine it can be quite complicated to live with. Both the conditions are noise reactive as well. Meaning that exposure to noise increases the volume of the tinnitus and also increases the sensitivity to noise.

FORGIVING PEOPLE’S IGNORANCE

I have had some bad experiences from people who simply don’t understand my conditions or think that I am making it up or think I’m simply being awkward for the sake of it. I have had people shouting at me and getting angry when I tell them I am in pain and cannot tolerate what they are doing. I have lost friends since developing my conditions because I can no longer do the things I used to do before with them and they were not willing to do quieter activities that I could do. Sometimes because of people’s ignorance and lack of understanding it sometimes makes me scared to do stuff at all.

One really horrific example of how horrible/ignorant people can be will live with me forever. About a year ago I went on my first ever holiday abroad to Gran Canaria with my partner. We had to take a 2 hour coach journey from the airport to the hotel. The journey to the hotel was bearable but on the way back it was a nightmare. My partner and I were the first people on the return coach journey and when we got on the coach it was immediately painful. The driver had an untuned radio on which was making weird noises all over the coach. My partner got him to turn it off and we thought that was the end of it. About 5 minutes later the driver turns on the radio and there was no escaping the noise. I was in shear pain and even my ear plugs were not protecting me. So my partner went to explain my conditions to the driver and was met with refusal and abuse. I could not take 2 hours of loud music and felt like crying with the pain. I would of quite happily sat in the luggage hold under the bus with the suitcases just to get away from the noise at this point.

So my partner used his phone to translate my conditions for the driver to read. My partner then went again to ask the driver politely to turn the music not even off (as any music is painful to me) but to turn it down and was met with more refusal and abuse. If I was on my own I probably would have broke down crying with the pain and knowing it would continue for the next 2 hours. Also I know that further exposure to loud noise can do even more damage. By now the coach is getting full of people, none of which have objected to turning the music down. In the end my partner had to go down to the coach driver and have a massive argument with him and threaten to report him to his bus company and was met with a huge amount of abuse before after about 10 minutes he turned the music down slightly. But as the journey went on we heard him creeping the volume up.

Other examples of fearing the unexpected is stuff like being stuck in a queue and there are kids screaming or being noisy and it hurts my ears even more. I never get public transport as the thought of being stuck with noisy people which I can do nothing about terrifies me.

BEING AWKWARD

Doing normal things becomes quite tricky and there are plenty of things I will never do. Like I will never be able to go to a concert, cinema or even a family party with a DJ any more. Going out for a meal with family or my partner can be difficult too. We have to phone ahead to new places to check whether they play music and how loud it is. Then when we arrive we often have to ask them if they can turn it down in a certain section. Some places are nice and some refuse. But I always feel like a nuisance because even when I am wearing ear plugs the noise is still uncomfortable for me and I feel like my noise limitations are limiting what those around me can do when they are with me too.

LUCKY

I consider myself lucky that I didn’t get tinnitus and hyperacusis until my early 20’s as there are many children who have the conditions. I was able to finish school and go to college and have a normal childhood. But many children who have hyperacusis especially are not able to be in a noisy school environment. It can have a devastating effect on their lives. I read recently about a young girl who developed hyperacusis because she was at her friends house and her friends dad used an air horn by her ear. That simple, quick act changed the rest of that girl’s life and has already caused her so much pain. So it can happen at any time and may not always be our fault.

UNDERSTANDING

Often because on the outside you look totally normal and healthy people think there is nothing wrong with you. So they don’t consider your conditions to be real. I know it can be hard for other people to understand stuff that they are not going through but hopefully if my blog can help you be a little kinder to someone with tinnitus or hyperacusis then it was worth writing. I have had to face many rude people who are rude simply because they do not understand. Hopefully by sharing an insight into my life others will benefit from more understanding and empathy in theirs.

ADVICE

Our ears are so precious and you don’t get any warning for these conditions. So if you want to listen to loud music then please use filters to make it a little quieter or ear plugs. Ear plugs only block out about 30% of noise in my opinion so you will still be able to hear music at a concert. I wish I could go back in time and wear them as living with tinnitus and hyperacusis is certainly more trouble than putting ear plugs in would have been.

Thank you for reading.

Miss Ruby Hearts

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