Donna has heard a ringing in her ears for as long as she can remember. Her son Scott only noticed his a few years ago. Both live with tinnitus, and both say the sound itself is not what bothers them most. What they miss is being able to hear clearly. We spoke with Scott and Donna as part of our conversations with Americans living with tinnitus. Their story shows a side of tinnitus we hear less often: people who have learned to live with the sound, but still struggle with what comes with it.

Donna’s in-ear concert

As a child, Donna did not know the ringing was unusual. "I just always had ringing in my ears and I thought that was normal. I thought everybody did." Looking back, she sees how it affected her. She could not make out the lyrics of songs. In the movie theater she only caught part of the dialogue. "I think I was missing a lot and just didn't know. I just thought, well, that's the way I am."

About eighteen years ago she started wearing hearing aids. At every hearing test she asked about the ringing. The answer never changed: there is nothing that can be done. She believes a deafening concert night and years of loud earbuds on busy roads made it worse. Today the sound is most noticeable when her hearing aids are out. It is rarely a steady tone. "It goes high and it goes low. I have like a concert sometimes in my ears." Yet it does not bother her. "I'm so used to it. It bothers me more because of the way it impacts my hearing than the ringing itself."

Is the world supposed to ring?

Scott's first clue was the freezer. When the door is left open, it gives off a high pitched beep. His family heard it every time. He did not. "I would record it on the phone and I could hear the recording, but I couldn't hear it live." Then he started to notice a ringing in quiet moments. One evening he asked his wife a simple question. "Does the world ring to you? When you're just sitting in silence, is there a little bit of a ring?" She said no. When the topic came up with his mother, she said she had always had it. Over the past couple of years the sound has grown louder for Scott.

He has not looked for help much. He cut out caffeine after reading it could play a role, but it made no difference. For a long time he did not want to see a doctor. "I didn't think they were going to be able to do anything for me." His wife convinced him to book his first appointment. 

Living with it

Scott says he does not think about the sound for about 90 percent of the day. Like his mother, he finds the lack of hearing harder than the ringing. Both see their calm as partly a matter of mindset. Scott understands why others struggle. "It is a loud noise. It doesn't go away. I can see how it could torture people." Neither of them talks about it much. Donna mostly mentions it when she has to apologize for not hearing someone. Occasionally the other person says they have it too. For Scott, staying quiet is a choice. "Talking about it makes me think of it more. So I prefer to not talk about it." A family thing Scott and Donna did the interview together. That is no coincidence. Scott does not know anyone else with tinnitus. "I don't talk a lot about this. I don't really know who has this. It's not a visible thing," he says. "The one person I do know, who maybe gifted it to me, was my mother." Donna assumes it runs in the family. She does not remember her own parents having it. "They could have. I just don't know." When Scott told her about the ringing, she felt sorry for him. Growing up with her helped Scott recognize what was happening to him. The TV shows he could not follow and the restaurants where he lost the conversation because of too much background noise were familiar. "I grew up with her," he says. He had seen it all before.

New perspectives

During our conversation we told Scott and Donna about Freequency. The app does not try to remove tinnitus but helps people change how their brain responds to it. Users recreate their own tinnitus sound in the app and expose themselves to it every day for 100 days, in short and playful sessions. Daily messages explain what tinnitus is and what happens in the brain.

Scott recognized the idea right away. "I do think what you're doing is you're trying to train the mind. To not focus on it, or certainly if you do focus on it, to not let it freak you out."

Scott and Donna's story is one of many. Tinnitus can run in families, and it often comes with hearing loss and the message that nothing can be done, in a healthcare system that does not make it easy. Freequency does not promise to make the sound disappear. It helps you learn to live with it, so tinnitus takes up less space in your life. Does this sound familiar? We are currently inviting a small group of people to use Freequency and share their experience with us. Get in touch to see if Freequency is a good fit for you.

For privacy reasons Donna and Scott asked to remain anonymous. The cover photo is not representative of Scott and Donna.