There is no silence

A story about living with tinnitus, and how to cope.

Tinnitus is such a hard thing to explain. Describing what it is is simple enough. Most people have experienced “the sensation of hearing sound when no external sound is present.” But describing what it’s like to live with it 24 hours a day — when the sensation never goes away — that is a different story.

How do you describe what it feels like to have an unquenchable desire for silence, and knowing that you will never ever experience it again?

How do you describe what it’s like to constantly want to reach inside your brain with a spoon and just scoop out the noise? What it’s like to deal with the fact that it’s not really a disease, it has no cause or cure, and all you can really do to deal with it is learn coping mechanisms to mask the sound?

Lots of people have tinnitus, of course. This interview with Chris Martin turned geeky about the topic pretty quickly, for example. But knowing you’re not alone is little consolation for what is ultimately an extremely lonely and isolating experience.

I’m having a particularly bad tinnitus day today, so I’m turning to writing to help me cope. And today I thought I’d write down a couple of lessons learned over many years and many doctors, in the hope that it might be helpful to others.

Avoid the online forums

When my tinnitus got really bad about a year and a half ago, I did what we always do when we find ourselves with a medical issue we don’t understand: I went straight to Google. Even though I know this is a mistake I still dove deep into the online tinnitus forums. Oh, there are so many of them.

At first I thought I would find a supportive community. But what I found was mostly misinformation and pseudo-science, and a “community” of what appears to be professional tinnitus forum writers.

You will not find anything useful on these forums. You will not find the cause of your tinnitus, and you will certainly not find its cure. I tried the do’s and don’ts, all the “eat this” and “avoid this” suggestions. All it did was make me more frustrated and scared.

Instead, try to find your safe tribe. People you know and trust in real life, who share a similar experience, and who you can talk to. You probably won’t get any “hacks” on how to make things better, but their company will be comforting as you share your experiences.

Find the next best thing to silence

My breakthrough, such as it is, came when I went to see Dr. Marsha Johnson, an audiologist who specializes in tinnitus. After going through my hearing test, and identifying the frequencies of the tones I “hear”, we had a discussion about how I currently deal with my tinnitus. I mentioned how I try to avoid noise at all cost, for fear of making things worse. She explained how this is the exact opposite of what I should be doing.

Avoiding noise is a terrible idea for tinnitus sufferers, because it shines a spotlight on the experience. Silence becomes deafening and debilitating. Instead, the way to cope with tinnitus is to find “masking techniques” — things that take our attention off it so we can focus on other things.

For me, this meant turning to music that approximates the silence I crave.

I went on a journey to search for something that can mask the sound of my own brain, without adding even more noise to it. For me, that road led to the genre of post-classical music, particularly artists such as Nils Frahm, Ólafur Arnalds, and Max Richter. As an example, here is Nils performing his song “Says”:

Nils Frahm — Says (Live on KEXP)

I get that for most people this would qualify as background music. But for me, and other tinnitus sufferers I know, this kind of music is very much active listening. It is not silence, but it has the same calming and focus-inducing benefits of silence. The difference is that instead of two loud tones in my head, I mostly hear the music. It’s a trade-off I’ve learned to be ok with.

Ultimately, it’s important to remember that the only way to cope with tinnitus is to think about it less. That is, of course, an almost impossible task. It’s not how we’re supposed to deal with our problems—we’re supposed to face things head on and fight. That’s what I did for months, until I realized that fighting only makes it worse.

So my one recommendation for my fellow tinnitus sufferers is to continue searching for that elusive combination of distraction and masking that can help you focus on the other things in your life.