No, it’s not just a loud ringing in your ear as a result of one festival too many. Tinnitus, also known as tinnitus, comes in all kinds. Composer Stephen Emmer and health psychologist Rilana Cima call for more attention to the invisible phenomenon. “We shouldn’t just tell the scare stories, but we also shouldn’t sweep anything under the rug,” Emmer believes.
As many as 20% of Dutch people have tinnitus. With tinnitus you hear a constant beep or noise that does not come from the environment. If you have tinnitus, it doesn’t have to be annoying right away. Only 3-6% have a tinnitus impairment where the noise is perceived as annoying. Why are some people bothered and others not? “In people with tinnitus impairment, the sound is registered by the brain as a hazard. If it is interpreted as dangerous, then it is very difficult not to pay attention to the sound and not be concerned. Your brain then wants to adjust something to ensure safety,” explains health psychologist Rilana Cima, coordinator at Adelante and Maastricht University’s Tinnitus Expertise Center.
Cima compares a tinnitus impairment to a spider phobia: “With a spider phobia, the brain is also ‘set’ as if a spider is life-threatening, even though people know it’s not. It’s the same way with people with tinnitus impairment.”
Composer Stephen Emmer, who works for Artists Against Tinnitus, has had such a tinnitus impairment for nearly 15 years. His tinnitus is accompanied by hearing damage, which he suffered at the same time. “I was performing as a pianist and the band members had turned the sound up loud as a joke, without me realizing it. I got a huge pop when I pressed my keys.” He didn’t suffer the damage immediately then. “But twenty years later, I’m lying in bed and I don’t understand what my girlfriend is saying from the bathroom.” That is the moment he notices he has hearing loss as well as tinnitus.
Make no mistake, because one of the biggest misconceptions that exists about tinnitus is that hearing loss is the cause. If you go to a festival, you will get the message: put in your earplugs or you will get tinnitus. But that’s not how it works. “There is definitely a relationship between hearing damage and tinnitus, but it is not a causal relationship. You can always get tinnitus,” Cima explained.
However, hearing loss does sometimes allow you to perceive tinnitus better. “When you have hearing loss, sound from outside doesn’t come in as well. Whereas tinnitus is sound in your brain, so it’s always there. People who are hearing impaired have less ambient noise, so tinnitus can be perceived more quickly.”
Cima stresses the importance of nuanced information that doesn’t just involve threats. As frustrating as tinnitus is for some, it doesn’t always have to be such an intrusion on your life. “One in five people have tinnitus, but not everyone is affected by it. When you do have a tinnitus impairment you can feel very ill, so I certainly don’t want to trivialize it. But we have to keep the threat low because you don’t have impairment right away when you hear it.”
In addition, extreme stories can also be a trigger for others who do experience annoyance from their tinnitus. “In people who suffer from tinnitus, the sound is linked to danger. A threatening story can only make that worse.”
Emmer also knows that it is important not just to share scare stories. Still, he doesn’t think we should sweep anything under the rug either, because he knows those scare stories. “When I was in a group for cognitive therapy fourteen years ago, there was a man among them who suffered more than the others. It ended badly for him; he dropped out of life.”
How can some people get to this point, while others are not bothered at all? “Our therapist told us that he could perceive the sound as worse. It’s just how you perceive it,” Stephen says. In addition, it also has to do with how quickly you get used to the sound. “There was also someone in the group who suffered from rhythmic tinnitus. That got worse when he went running, for example. Habituation can only happen with regularity, so an irregular sound is almost impossible to get used to.”
Many people with tinnitus impairment seek distraction from sound. Emmer used to do the same: “Then I would put on music, or have one of those buddhas with a waterfall.” But that’s not the path to habituation, Cima said. “You have to expose yourself to the sound. If you allow it, fear and panic will rise for a while, but after that, your brain will notice that the sound is not a life-threatening hazard. That does take time and confrontation.”
“You never get used to it if you hide from it. You have to go toward the sound with your attention, but a lot of people find that scary. Me too,” Emmer says. Still, he knows it helps – and a lot better than many “solutions” that can be found on the Internet. “A candle in your ear, or drops and pills: that’s all false hope. I know that, because I’ve tried it all myself. But it’s not going to make you feel better.”
Emmer and Cima are pushing hard for understanding. “Many people misunderstand because tinnitus is not visible, it is not a deep scar on your body. Therefore, they have the incorrect assumption that it’s between your ears – they literally and figuratively confuse,” Emmer says. Cima and he also want to emphasize that tinnitus, whether you suffer from it or not, remains harmless. “Don’t fall into false hopes, but don’t give up either. Because it really isn’t deadly.” Whether Emmer has since learned to live with his tinnitus? “Yes, I actually have. That’s the first time I’ve said that.”
