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Living With Tinnitus Harnessing a Hub. Hazel Goedhart
Harnessing a Hub
How a tinnitus community director pays it forward after learning to live with tinnitus. By Hazel Goedhart
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I remember when I first heard it, over three years ago now. I was lying in bed and suddenly it was there, a highpitched screeching sound. It scared me, because I instantly realized this was tinnitus and it might be with me for life.
I had heard about tinnitus, or hearing a sound without an external source. A friend once mentioned to me that he had had it since childhood. (He seemed fine with it.) And there had been a big news story in the Netherlands, where I lived at the time, about a woman whose euthanasia request was granted on the basis of her suffering from extreme tinnitus and hyperacusis (sound sensitivity). I never thought that would happen to me but still, how could I ever learn to cope with this awful noise in my head?
The hardest to cope with was simply that the noise was always there. No respite, no escape. I had never been a good sleeper, but bedtime now became an ordeal of many hours, while trying out various masking sounds (most of which only seemed to aggravate my tinnitus). Within a week I was completely exhausted and had to admit this was not going to be resolved quickly. I called in sick from my job, and it ended up being several months before I could return to work.
In the meantime, I went to the doctor multiple times, seeing different general practitioners. They each seemed to have a different response. One of them was convinced my tinnitus could not be chronic, because I was too young (I was in my late 30s and have since learned that chronic tinnitus can occur at any age). Another seemed to insinuate it was all in my head. I had to beg for a referral to an ENT (ear, nose, and throat specialist), which I later learned should have been standard practice.
As it turned out, there was no clear underlying ear problem in my case, other than hearing loss. The strange thing about the hearing loss was that it was mostly in my right ear. The ENT and audiologist couldn’t explain my one-sided hearing loss but mentioned that sometimes this can be the result of a viral infection. I guess I will never know, and I have long since let go of searching for the cause of my tinnitus.
Then came the hardest part: learning to live with it. This is what all the healthcare professionals will tell you to do, typically in an offhand manner that suggests no difference from learning to live with a benign mole.
I decided to do whatever it takes to get used to my tinnitus. Of course, I still hoped it would just disappear, as it does for some people. But I knew I must be prepared for the other possibility as well. As it turns out, years later I still have not experienced a single moment of complete silence. But thankfully, there are many moments and even entire days that pass without me consciously noticing my tinnitus.
This is called habituation, a natural adaptive process that occurs in the nervous system when a repeated stimulus causes less and less of a response over time. This process allows us to filter out background noise from our conscious experience, focusing only on sounds that are considered important. An example of habituation is someone living next to a railway track who gets used to
After she became habituated to her tinnitus, Hazel Goedhart wanted to help others as a volunteer at Tinnitus Hub.
I would never say, just because I found a way to coexist with my tinnitus, that I know all the secrets. I see YouTube videos and online courses being offered, which irks me because—apart from the obvious fact that some are clearly taking advantage of a vulnerable group—I strongly believe that everyone’s journey with tinnitus is different and there is no one-size-fits-all solution.
trains coming by many times per hour and eventually no longer consciously hears the trains.
It was a great relief to notice habituation setting in. I don’t know if I did anything specific to help it along. I did an awful lot of yoga, walking, and meditation. That might have helped, or it might have just been the passage of time that made me feel better.
I would never say, just because I found a way to coexist with my tinnitus, that I know all the secrets. I see YouTube videos and even expensive online courses being offered by people who claim to have some kind of ultimate knowledge, which irks me because—apart from the obvious fact that some of these offerings are clearly taking advantage of a vulnerable group—I strongly believe that everyone’s journey with tinnitus is different and there is no one-size-fits-all solution.
Something that certainly helped me was to engage with others on the Tinnitus Talk forum. It helped to know that I was not alone, and not crazy for struggling with this. It also helped me immensely to read the Success Stories section of the forum, with literally hundreds of stories from people who, after going through extreme hardship, ultimately found their own ways of coping with the condition. I made real connections with peers on the forum that endure to this day.
Once I felt better, I wanted to pay it forward. I contacted Tinnitus Talk’s management and found out it was run by a small group of volunteers on a shoestring budget. I also discovered, to my excitement, that they did a lot more than just the forum, like data collection for academic research.
Today, in addition to my day job as a sustainability expert, I am the co-director of Tinnitus Hub, a U.K.-based nonprofit with a global reach. We offer peer-to-peer support through the Tinnitus Talk forum, educational videos, and a podcast. And we promote cure-focused tinnitus research through citizen science, such as involving volunteers in data analysis and gathering community input to inform research directions.
I have observed, in myself and others, that habituation is not a black-and-white state. Some achieve habituation in a few months while for others it takes years. It is possible to be partially habituated, being fine on some days and struggling on others. And one can have setbacks due to, for instance, new ear trauma or stressful life events. I have also learned that unfortunately not everyone can or does eventually habituate. Hyperacusis can be a compounding factor in all of this, which in its worst form means everyday sounds at typical volumes cause pain.
For all these reasons, I strongly believe that a cure for tinnitus is needed. Even though I count myself lucky to live a good life with tinnitus, I still would prefer to be rid of the noise in my head. But most of all, I want the cure for the many others who are less fortunate than me and struggle on a daily basis. Until that day comes, the best thing we can do is stick together and help one another.
Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala. For more, see tinnitushub.com and tinnitustalk.com.
Share your story: Tell us your tinnitus journey at editor@hhf.org.
