The Silent Challenge of an Invisible Disability

Imagine if two people approach you and start speaking to you, and suddenly you realize you can’t hear anything around you and cannot understand a word they are saying even though they repeat themselves five times. Imagine if two more people approach. You would probably start sweating, having thoughts running in your head, trying to control your overwhelming fear, and trying to understand what’s happening to you. You might even feel nausea or like your heart is beating too fast. Worst of all is feeling like you are stuck in a black box and cannot get out.

From my experience, I can tell you that hearing loss is more than just not being able to hear. Hearing loss can be horrific, frustrating, and isolating, especially when you consider that many times it’s invisible to anyone who doesn’t experience it firsthand.

Despite being one of the most common disabilities globally, hearing loss is the least recognized. It is often overlooked, leading many people to think it’s nothing more than an inconvenience they can live with. The reality of hearing loss is much more challenging than how it seems, particularly for those with sudden hearing loss. During the past years, I have been learning a lot about hearing loss. Last Summer, I had the opportunity to extend my research while participating in a startup program called “1909 Accelerator” and NSF-Icorp through FAU Tech Runway.

When I speak about my startup and research to the hearing community, they often think hearing loss is “just a small thing,” that it is just a natural byproduct of aging and sporadically in younger people, and that there is a minimal amount of people with hearing loss. Well, let me tell you, according to the World Health Organization (WHO), over a billion people worldwide have hearing loss, but 430 million people require rehabilitation to address their “disabling” hearing loss. The person sitting next to you might have a hearing disability; you and they might not recognize it. Most people I met did not know they had hearing loss. It took months and years to find out about it. I am one of them. I learned about mine at the end of my fourth-grade year. Last year, I met and interviewed people who were between 18 to 75 years old. Some lost their hearing overnight, others in the middle of a baseball game or a football game because a ball or player heavily hit them. Some lost it at work during a conference. I even met those who lost it during pregnancy or after getting a fever, being involved in a car accident, taking medication, and being diagnosed with a disease that affects their hearing ability. For others, it was genetics. I have met a few who were born hard of hearing and became hearing. At first, I couldn’t believe these stories even though I am deaf, but the more people I met who were late-deafened, I started understanding and believing it.

When I heard their stories, I was grateful that I was born with my hearing loss because I couldn’t imagine that level of fear and agony; they went from hearing to being deaf overnight or within a minute or second.

Just the thought of it is terrifying because I know the challenge of being a deaf person. Can you imagine going to bed as a hearing person and waking up the next day as a deaf person and someone starts speaking to you, and suddenly, you realize you cannot hear a thing but only see their lips moving? Can you imagine someone’s voice decrease while they are talking to you? Can you imagine if this happens to you while at work during an important board meeting or a social event? Can you imagine being in a group conversation and noticing you are having trouble keeping up with the conversation because your ear keeps ringing or buzzing non-stop? Can you imagine not being able to concentrate or even sleep because of the non-stop ringing in your ears? Lastly, can you imagine trying to lipread an audiologist telling you, y_ur _ _ea_ing reel _ver come back _ _ _ there _ _ no cure (your hearing will never come back and there is no cure).

I don’t complain about my deafness because I have always thought there’s always someone who has it worse than I do, and that it is harder for those who become deaf. Instead, I consider it a gift that comes with challenges. Still, I complain about the lack of accessibility in society, people trying to design this world into a place not built for those like me, and those who are trying to do things about us without us.

Learning how to adapt to a new life overnight is hard for people. Even for me, it is still tricky. I am still learning how to live with my disability. But those who become deaf must learn to accept that sometimes they will be part of a group but not part of the conversation. They will deal with communication barriers and impatient people daily.

They were taught to rely on audio to listen, but because of their hearing disability, they will have to relearn how to listen with their eyes at the speed of sound and rely on other senses. When you lose one sense, it is hard to learn how to live without it.

Some of the people I met changed career paths; others lost their profession due to their hearing disabilities. For most of them, when they lost their hearing, they felt like their world had crashed; they did not know where to find help, what to do, or who ask for help.

They felt like they were stuck in a place of darkness. The behavior of the people around them changed. Their relationships with family and friends changed. People often feel sorry for them, get frustrated, annoyed, or treat them like they are too needy.

One of the most valuable things I learned from my experience and the people I met having a hearing loss changed things; it challenges you, but it does not limit you. I was fortunate to have had the opportunity to meet every one of them, especially those who shared entrepreneurship advice with me.

*A special thanks to those in the deaf/hard of hearing community who volunteered to share their stories with me and helped me with my research for the Koda app Listening to each of your stories helped me understand my disability and made me recognize that I am not alone; it also helped me gain self-confidence. Most of all, it created a profound shift in my life. I am forever grateful!