Hearing loss—a hidden disability
I have a disability. It’s a hidden disability, easily treated, but still creates a disadvantage for me. AND, I am still complete and whole. I have hearing loss and I wear hearing aids.
Disabilities have a lot of stigma. Hidden disabilities are often overlooked and minimized because they can’t be seen. They are harder to relate to and often they are easily treated. Understanding hidden disabilities and how they effect people, can help us better empathize with each other.
My family has hilarious stories of things that I thought people had said. [insert one of those funny stories] When my two kids were younger, my husband would sometimes come into a room and look at me and say, “Are you deliberately ignoring our children?” And I would looked shocked and say, “no, I didn’t realize they were even talking to me.” For years, I had ringing in my ears if it was quiet.
How did I get here?
Genetically speaking, hearing loss runs in my family. My grandpa was completely deaf in one ear and about 70% deaf in the other for most of my teenage years that I knew him. My dad got hearing aids in his late 40s, but he also worked construction and drove truck for a significant part of his career. It was likely an inevitability that one day, I too would have hearing aids.
I worked in construction. I was in band in middle school and high school. Maybe I like driving with my music a little louder than is smart. In my late-twenties, I started thinking I should probably take care of my hearing a little better or I would need to do something about my hearing sooner. For years, we’ve been watching movies and tv shows with the captions on, so that the tv could be quieter while our small children slept.
Masks unmasked my disability
Then the Covid-19 pandemic hit and once we were able to come out of lock down, masks were required everywhere. Part way, through a PTA meeting I was running in the fall of 2020, I realized I had said, “I’m sorry, could you repeat that” for about the umpteenth time. There was a round table discussion happening and it struck me that I had no idea what people were saying. I couldn’t follow the discussion.
I was frustrated. We finished the meeting and I came home and complained to my husband how difficult it was to understand what was happening and to hear with these darn masks on. This continued for several months; I simply couldn’t understand what was being said around me out in public. Frequently, I had to ask several people to repeat themselves.
I mentioned to my husband that I felt like my head was constantly underwater and speech was muffled. “Did I have an ear infection?” “Were my allergies affecting me this strongly?” “What was wrong with me?” “Why can’t I hear what’s going on around me?” “Why am I constantly having us listen to music and tv shows/movies at such a high volume?” These were questions I grappled with regularly. I was feeling increasingly frustrated. Isolation was becoming a reality.
Taking action for hearing loss
I went to my annual physical in December of 2020, right after my fortieth birthday. Near the end of my apptointment, I mentioned that I was having a hard time understanding what people were saying. My doctor checked my ears again and said I didn’t have fluid, scar tissue, or a build up of wax. He recommended an audiologist in our town. I got an appointment set up and went to the audiologist in Jan 2021. I was nervous and a little scared.
What if they found I had hearing loss? I’m too young to start wearing hearing aids, right? What will this mean for me in terms of singing or playing musical instruments? Will I go completely deaf earlier? I had so many questions and fears. Repeatedly, I reminded myself that I needed answers and next steps. They tested my hearing. We talked through the results.
I had mild to moderate hearing loss. There was no way to know how long this had been happening, but I discovered that I was relying on lip reading to fill in the context of many conversations. The pandemic had everyone’s mouth’s covered and my lifeline to understand what was happening around me was gone.
Next steps to treating my hearing loss
The problem solving part of my brain kicked in, “ok, I can do this” I thought. The problem is identified; I can find a solution. The audiologist was surprised by the level of my hearing loss at my age. He suggested that I see an ENT to make sure there is no medical reason that could be contributing to my hearing loss and then we’d talk next steps. I got my appointment with the ENT. She reviewed my test results and asked me several questions.
Looking in my ears she said, “well, there’s no wax build up. That would be the easiest fix.” “Your ears look great! I think this is just a unique case of hearing loss at a younger age.” I thanked her and headed back home. Realization setting in, hearing aids were the answer. What did that mean for me?
Meetings were still rough with everyone’s face covered. It became common practice for me to start interactions, “I have hearing loss, so if I ask you to repeat yourself, it’s not personal, I just can’t hear.” And still, I felt frustrated at how many times I was asking people to repeat themselves. I still felt isolated. Now, I needed to get my hearing devices.
How do I afford hearing loss?
Crushed, I was apprehensive and scared about what this meant for my future. It’s common for hearing to progressively worsen as we age. Here I am, forty years old and looking at getting hearing aids. I had my follow up appointment with the audiologist to talk through next steps and see what my options were. Given how much of my career was still left and that I would need to integrate with technology. $7,000! The brand and pair available at this office and meeting my needs was going to cost $7,000. I told him that I would need to talk with my husband and figure out our next move.
I needed hearing aids, I knew I needed hearing aids. AND I knew that at that time, $7,000 would break us. How on earth would we come up with $7,000 for a device that would maybe last three years before it would need to be replaced? I was discouraged because I couldn’t continue living with how I would have to interact with the world around me, especially not knowing how long it would be before I would be able to read lips again. Would I lose my ability to infer context from lip reading if we spent years in masks? I was scared and discouraged almost to the point of overwhelm. How do I afford this technology for my disability? How could I afford this?
Other options
I finally called my dad. My dad had years of hearing loss and dealing with hearing aids and he is a vocational rehabilitation counselor. There was an answer I wasn’t aware of for my dilemma. My dad suggested I connect with vocational rehabilitation through the state of Utah. He also suggested that I could get a second opinion from another audiologist and that I didn’t have to buy hearing aids through the doctor that tested me.
As Keith and I discussed what our options were, we finally decided that we would make the nearly seven-hour drive to see my dad’s audiologist. I set the appointment, shared my paperwork and hearing test results. We made plans to stay with my sister. Yes, my audiologist is in a different state than I live. But I needed someone I could trust at that time.
We made it to my appointment! My husband came with me to help me understand what people were saying to me and to support me as I got my hearing aids. We selected the device and then they were programmed and fitted to me. They taught me how to use them, care for them, and to use my app. They walked me through scenarios that I might want a different volume or program than the default and then we put them in to turn them on. The audiologist warned me that all the stimuli might be a lot to take in and that it was okay to slowly adjust to wearing them all the time.
I heard and I cried
Nothing could have prepared me for what it would be like the first time I would hear using my hearing aids. I was so nervous, and then my husband spoke and I heard the richness of his voice that I hadn’t heard for over a decade. I cried. For the next two hours, I cried at everything. I heard the sound of the wind again, I heard birds, traffic, all the little noises that I hadn’t realized were even missing from my range of hearing. We got to my sister’s house and then my kids spoke and I heard their voices—the full range and timbre of their voices for the first time in their lives. It was such a beautiful thing!
The next day as we started back home, I learned that the road noise was something that was over stimulating and I had to travel without my hearing aids. Most of the first year with my hearing aids, I couldn’t travel with them. I learned about hearing care and that tinnitus (ringing of the ears) is phantom sound where the brain is no longer receiving signal. There are things that I now remind our kids about to help them protect their hearing and avoid advancing their hearing loss earlier in their adult lives.
Hearing care advocate
I have become a walking billboard for hearing protection and loss. As a remote employee, I spend a lot of time on video conference calls with my teams. My role requires that I lead most of the meetings I attend. I choose to tell my teams, “I have hearing loss and wear hearing aids. I’m not able to wear headphones. If I ask you to repeat yourself, please don’t take it personally.”
It took almost nine months before I realized and processed that I have a disability. Occasionally, I take time to process through how that makes me feel, what my fears are for the future with my disability, what it’s going to look like when I need to get my next pair of hearing aids (all tech has a shelf life,) and to make peace with myself that I will lose more of my hearing, but what I can do is care for what I do have to the best of my ability.
I trust the people I work with and recognize that sometimes I have to ask for help that I don’t want to have to need. I’m still learning. Who knows, maybe I’ll learn sign language‽ Modern medicine and technology have helped reduce the stigma around my disability—but we have so much more work to help create an inclusive world and society for others with disabilities.
Maybe if we empathize with each other and understand the disabilities of people around us, we can reduce the stigma of having disabilities. Manifest the good around you and let’s be HI together.