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Hearing loss - Emily's story

Emily Munns is a communications manager at Solent NHS Trust, with a passion for creating content and writing. In her 20s, Emily was diagnosed with tinnitus and then more recently started experiencing hearing loss in her left ear. To raise awareness around Deaf Awareness Week (May 2-9) and challenge stigma, this is Emily’s story.

“I’ve never historically had issues with my hearing. When growing up everything was fine. As a child I was loud and happy when playing with friends, used to love watching TV and movies as a teenager and then at university, spent most of my time (studying of course) in nightclubs feeling the bass of the music through my body.  But, in my early twenties, I started to struggle with a constant ringing in my head. I thought at first something was going off in my home, maybe an alarm or some white noise from my TV, but when it hadn’t disappeared after a few months I went to my GP. They examined my ears, and all was fine, but diagnosed me with tinnitus (a perception of noises in the head and/or ears which have no external source, and causes are unfortunately little known).

“At first coping was a struggle, it kept me awake at night and was exacerbated if I was listening to  music with headphones in – or if I was playing sports - it would get worse after intense exercise. It also affected my balance quite a bit, and years later I’m still coping with it. Some days it’s ok and I don’t notice, other days it’s a lot louder but my body seems to have gotten used to it. There is no immediate cure for tinnitus but there are treatments to make coping a little better – like paying attention to sound levels, meditation, and other self-help tools. It comes down to personal preference and what works for you – for me, ironically it gets better when listening to other kinds of sounds, with a low frequency – as to me the tinnitus is very high pitched."

As Emily was coming to terms with her new reality, and started accepting this change, she started to experience hearing loss, and this alarmed her.

“This was fine for a while and I had accepted that this was now part of me, but in my later 20s – well a few years ago now, I noticed I wasn’t hearing that well out of my left ear. I was slightly prone to ear infections as a child but thought nothing of it. One day, which I remember clearly, I was driving home from work and had the radio on in my car. I noticed that even though I had heard the music ok – the news broadcast seemed a little quiet to me, but not enough to keep me awake at night with worry.

“A few weeks later, I was in a meeting with quite a few of my colleagues. It was an important meeting with a client, I felt quite disoriented and had a lot of people positioned on my left side, I couldn’t really hear what they were saying and it came across like I was ignoring things or had no interest in the meeting, I was mortified. Explaining to my boss that I was present, but something wasn’t quite right. Then again at night resting on a pillow my partner would talk to me - I wouldn’t hear what he was saying – a pang of dread hit me, am I going deaf? What am going to do? Shall I learn sign language now? (for the record I think we should all learn sign in school like we do French and Spanish, communication is the key to reducing feelings of isolation).

“I tried to ignore it for a while – a few months even but I couldn’t run from it any longer. I made another appointment with the GP who then referred me onto a ENT specialist for a hearing test. What came next was a bit of a shock to the system.

“The test came back, and the specialist told me I’d lost 70 percent of my hearing in my left ear. They looked further, I had scans, MRIs, and an endoscopy to look down my throat and, more tests. No diagnosis was made, it’s a bit of a mystery as to why my hearing is going and I think this is the hardest part for me. The specialists were great, and did everything they could to find out, but I still haven’t had a concrete reason to what’s happening. I must come to terms with it somehow, but the reality is, it’s getting worse and predictions mean I won’t have any hearing in that ear by the time I’m 30 (2 years’ time).

“I had a hearing aid fitted and was immediately conscious. It kept getting tangled in my hair, and especially my mask. It would frustrate me so much that I just wouldn’t wear it and just accepted that I’d have to ask people to speak up or repeat what they said for the fifth time. My colleagues now are so supportive and are always great, getting used to me asking for things again or to repeat words – we have a joke, and this is the best way for me. I don’t want to feel like anything is different or for people to speak so loud to me that I look like I’m stupid.

“Working in communications myself I’ve come to realise how important accessibility really is. Subtitles, audio descriptions, even interpretation is so important I think it’s still a bit sad to see that it’s not that common on TV programmes, or movies. When I was younger, I remember watching T4 on a Sunday and this was the only day I’d see someone doing sign.

“Now, because I do have hearing in my right ear, which is fine, I don’t need to watch movies or tv with an interpreter, but in the future, there is every possibility I might need to. So, I think personally for me it would be good to have more of this on mainstream channels. Yes, it might seem annoying for those with no hearing loss, but it’s a small price to pay for making society a little better for those who live differently with a disability.”

Patient Advice and Liaison Service (PALS)

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