Tinnitus Awareness Week may have been and gone, but the ringing in my ear which can rob me of a good night’s sleep certainly hasn’t.
“I have tinnitus,” I explain to someone new. “Mine’s kind of like the whistling of a kettle.”
Interestingly, in contrast to when I’m talking about my deafness, I feel less confident in describing my tinnitus. It’s easy to talk about being mildly deaf in relation to so many different factors: what sounds I can struggle to hear, my perception of volume, what I would be able to hear without my hearing aids on or so forth.
When I’m thinking about tinnitus, even calling it a ‘whistling kettle’ doesn’t quite fit.
I’ve called tinnitus an ‘elusive condition‘ before, and it makes sense when I think about the above. Every time I’ve had a hearing test, too, the ringing in my ears constantly adjusts to the warble of the sample sound being played into the headphones.
While we can be grouped together in terms of our deafness (hello, fellow mildly deaf folks), tinnitus has the power to be quite isolating. With tinnitus sounds being so incredibly unique, I’ll never know if another tinnitus sufferer has the exact same type of sound which I have to deal with.
So, as I think back to Tinnitus Awareness Week last week, and read about the British Tinnitus Association (BTA) and Action on Hearing Loss’ plans to commission more research into the condition, I think it all makes sense. The only way in which I can better describe my tinnitus comes with research, and at the moment, that research is so very little.
The figures from the BTA are striking: “tinnitus currently receives 40 times less funding than comparable conditions like depression, anxiety and hearing loss.” When you consider the links between deafness and tinnitus, the disparity is all the more baffling.
As a result, the BTA have launched a petition to get the Government to commit more funding for tinnitus research, and I’ve already added my signature. Looking into it some more, the charity’s manifesto on the issue calls for the identification of ‘tinnitus subtypes’ too. This would not only mark a significant step towards a cure, but I imagine it would help create more communities amongst tinnitus sufferers, much like we have mild, moderate, severe and profound to describe deafness.
Looking at the Change.org site now, I’m thrilled it’s already surpassed the 15,000 mark. Just 10,000 was needed for a Government response.
Away from petitions, it seems we have already had a promising initial reply from the Health Secretary, Matt Hancock MP. Answering a question from Sir John Hayes MP, the cabinet minister said he is “very happy to look specifically at the case for increased research funding into tinnitus”. It’s a great first step, but it’s time to keep up the pressure.
So if you haven’t already, sign the BTA’s petition on Change.org today.
Photo by Ollie Cole.
By Liam O’Dell. Liam is a mildly deaf freelance journalist and blogger from Bedfordshire. He wears bilateral hearing aids and can be found talking about disability, theatre, politics and more on Twitter and on his website.
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Robert Mandara
February 12, 2020
Liam, I am with you! I feel that even basic research would go a long way. It seems to me that researchers are not even asking the basic questions. If we have a database of people, describing their tinnitus sounds in as much detail as possible (e.g. whistling, wooshing, clicking, speech), volume, continuity (i.e. always or sometimes), whether they are deaf, how deaf they are, what caused their deafness, what hearing devices they use, how much coffee they drink etc., you would expect to see some common patterns emerge. Once people are grouped, it might be easier to see solutions. My tinnitus changed (not better or worse, just changed) after getting cochlear implants, so it’s simply not true that nothing can be done.
Liam O'Dell
February 12, 2020
Thank you so much, Robert! Glad you liked the piece, and I definitely think more research is desperately needed. I’m hoping this piece will get the BTA a handful more signatures on their petition!
myhearinglossstory
February 12, 2020
Great article, Liam!
Interesting you mentioned about the hearing test. In the sound-proof booth, my tinnitus sounds louder than ever. And, I’m often unsure as to whether I have heard a ‘beep’ or whether it is the sound of my tinnitus – it’s sometimes difficult to determine between the two.
Let’s hope many more sign the petition and that there will be some exciting advancements in tinnitus research very soon! The British Tinnitus Association are working hard to make this happen.
Best of wishes,
Carly
liamodell1
February 12, 2020
Thank you so much, Carly! I’m glad you liked it.
Oh, mine is completely the same! I hear that they can adjust the sound so it’s not too similar to your tinnitus, but I think mine’s so elusive that whatever sound they use, the ‘beeps’ just merge with my tinnitus. Gah!
Absolutely – the BTA are doing fantastic work with regards to pushing the Government for more funding and it’s great that some great steps are being taken already. Here’s to the petition getting even more signatures in the coming weeks!
Ruth Rose
February 13, 2020
There are oodles of university post graduates looking desperately for s good research project to get to grips with and earn a PhD…
Here is a perfect subject for them. I suggest that BTA writes a detailed specification of what research could be done, how to go about it, and the practical value of what rrsesrch results might achieve. This document should be endorsed by an academic professor of senior medical practitioner st a teaching hospital. Once ready, this specification should be circulated to medical research professors at University Hospitals all around the UK via the English Scientific Research Association (ESRA). Funding could be applied for from Knowledge Transfer Network (kTN) or European Knowledge Transfer Group. (EKTG), who have 15 Billion Euros to spend on projects over a three year period.
Preparing the groundwork and putting it under the nodes of those who can actually do something would help force the hand of politicians.
pennybsl
February 13, 2020
I’ve lived with tinnitus since – it’s believed – I started wearing hearing aids at 2.
I used to ‘create music’ with the cacophony inside my head, even imitating the opening and closing music of classic B/W TV programmes like The Lone Ranger, Bonanza, Rawhide, etc..
It’s true that wearing hearing aids ‘check’ the tinnitus but as a profound Deafie I tend to pick up unwanted sounds (I miss the old analogue hearing aids) wherever I go, even the hum of vending machines and hiss of air conditioning at the dead of night in University.
I have – sort of – understood it’s more of a “neuro” thingy – it’s important to regard the brain as an astonishing complex structure, with strands within that somehow echoes or picks up ‘apparent sounds’, then informs my sensory brain.
The brain isn’t mechanical nor unfeeling; there is still so much unexplored territory.
For me, both fascinated and intrigued about neuro issues (I have a skull injury undiscovered for half a century, that’s another story…), I am using visualisation and metaphor to understand the tinnitus I live with.
Jacqueline Ball
February 13, 2020
I’m a Mental Health Enrolled Nurse and I’m partially deaf from birth. I have tinittus right now as I’m reading your post and it’s currently to the sound of a high pitch alarm system, which is so annoying. I usually get it when I’m stressed or have had poor sleep, so obviously it seems to be neurologically connected. My sounds vary for example like birds in the roof or just ongoing beeping sounds, they can be intermittent or be ongoing for 6 months. I have actually looked after deaf consumers who suffer from chronic tinnitus which often leads to clinical depression/suicidal ideation/suicide and that breaks my heart.
So yes it is a good idea to petition for tinnitus research. Thank goodness I have learnt to manage tinnitus effectively, but unlike others, we need to find the real cause /solution of this neurological madness.