Not all hearing disabilities are hard of hearing or deafness.

It's been over one year since I was diagnosed with Ramsay Hunt Syndrome, a rare neurological condition recently getting a lot of attention in the press due to Justin Bieber announcing his diagnosis with the condition.

With this increase in attention and awareness about the condition, I felt it would be helpful to share some aspects of RHS beyond the facial paralysis and balance issues often focused on. I also have been recently asked to speak more about the topic in the press and to companies, which motivated me to write this update article here on LinkedIn.

First let's set some foundational knowledge about the types of hearing loss, because often I encounter situations where accommodations for hearing disabilities are only thinking about hearing loss. I work in the accessibility industry, and even amongst a11y specialists I have found that there is a lack of knowledge about the topic that I am going to discuss today.

So "hear" we go... see what I did there ;)

There are typically considered to be four types of hearing loss:

• Conductive hearing loss: This occurs when sound is blocked from getting through the outer ear canal and middle ear.
• Sensorineural hearing loss: This occurs when there is damage to the spiral ganglion, or nerves or hair cells in the inner ear.
• Mixed hearing loss: Also called combined hearing loss, this occurs when there is both conductive and sensorineural hearing loss.
• Auditory neuropathy: This occurs when sound enters and is processed by the ear without obstruction, but isn’t transmitted to the brain in a way it can understand.

My hearing disability is hyperacusis- this means I have hyperactive / hypersensitive hearing. I often hear some sounds considerably louder than intended. I also have some hearing loss at certain db levels. Most frequently I have a malfunctioning internal equalizer due to permanent nerve damage this means when there are ambient sounds I have a more difficult time hearing the primary soundtrack.?

How this impacts me in the workplace?

Sometimes my own volume level is off, when speaking.?Imagine your granny and gramps yelling in the home, they are often unaware they are speaking loudly.?Sometimes I'm yelling a bit because I'm not hearing my own sound level accurately. But this also impacts others speaking to me, especially in echoing or cavernous environments I hear someone’s speaking level as extremely loud.?

Digital interfaces exacerbate the situation because the way sound is transmitted through digital systems such as phones and laptop speakers can be more challenging than in person. This means when I speak to someone on the phone I almost always put the phone on speaker so I can adjust the distance of the speaker to my ear, beyond just the phones volume.?

Something that happens in the workplace that is unintentionally uncomfortable for me, music in meetings and presentations. We all love a good hype song! I love music and I love dancing. But since acquiring a hearing disability the poor quality sound and translation of music through platforms like zoom are really uncomfortable for me.

Having hyperacusis means sounds are not only inaccurately equalized but on the louder levels they are physically painful. A person with normal hearing can experience painful sounds too, they are just usually at much louder sounds like jet engines, sonic booms, and rock concerts. For me painful sounds can include, dishes clanking, car horns, loud restaurants, dogs barking and many sounds translated through digital device speakers.?

So what happens when my hearing is subjected to loud sounds?

Have you ever been partying in a club all night and then come home to your ears ringing? That high pitched sound you hear once you are out of the loud environment and finally home in bed? Well that’s what happens to me. Tinnitus is a very common secondary condition for people with hearing issues. This can be high pitched ringing AND the sensation of hearing your heartbeat or “the ocean” in your head. You know when you put a conch shell over your ear to hear the ocean. Well I hear that all the time when I’m in quiet settings. This is why I often turn on a movie at night to fall asleep. This is to drown out or redirect my brain from its hypersensitive focus on the high pitched ringing and ocean sounds whooshing around my head.?

So what can you do to be more mindful of others with hypersensitive hearing disabilities?

In person, be mindful of how noisy the environment is. Consider quieter environments or ask the person if they would prefer a less noisy environment.

In virtual settings, be mindful about music and video playback through platforms like zoom or teams, or give notice that you are going to play music or a video so the individual can mute their device. This also means don’t speak important information during this time as the person may have their sound muted and will not be able to capture that moments information.

And finally people with hyperacusis are not only those with nerve damage related hearing disabilities but also this can be common in individuals with autism and other sensory processing disorders.?