living with tinnitus
hearing health foundation
Harnessing a Hub
How a tinnitus community director pays it forward after learning to live with tinnitus. By Hazel Goedhart 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 22
hearing health
hhf.org
After she became habituated to her tinnitus, Hazel Goedhart wanted to help others as a volunteer at Tinnitus Hub.
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
