First, I live with single-sided deafness which is known by other names; however, I use the term single-sided deafness to convey the significance.
When I’ve told people that I have unilateral hearing loss, they believe that my non-functioning ear works with amplification
This usually results in people yelling at me or purposely making what I assume to be loud noises in my affected ear.
I rarely even say that I live with single-sided deafness, most often I choose to say that I am deaf on my right side. This often confuses people but I don’t have to endure their “battery of tests” – having my ear yelled into and people clapping their hands near my affected ear.
I was not born with single-sided deafness, but for most of my life I’ve had ear related issues. From early life until now, I have many ear infections. I had a speech impediment as a child and my hearing was a part of the issue. I had balance issues and my ears were the suspected culprit.
No one really knew what was going on at that time and I didn’t have a preferred health insurance plan —- here in the USA, your health insurance plays a significant role in the type of care you have access to.
Eventually, I was diagnosed with Meniere’s Disease and placed on a salt free diet for over a year. This was right before I graduated high school so the specialist I saw was located in the town that became my home during undergraduate.
I had a few specialized procedures and follow up appointments with the specialist.
Oh it’s important to note that my hearing was still in normal ranges at this time – in both ears. I had followed the salt free diet so well that when my time was up to eat this way – I basically stuck with it.
The main difference is that my parents didn’t have to trouble with preparing me a separate salt free meal.
During undergrad my sodium levels dropped too low and the specialist suggested I go to a popular restaurant, order their famous fries and ask for extra salt! Yeah, I never did that but I did eat more pickles and a few other salty foods. It took awhile but my sodium levels returned to normal ranges.
Two specialists warned me that I’ll likely lose my hearing – based on the available clinical information – as a result of many factors including Meniere’s Disease. I didn’t think much of this prognosis since no one could tell me when or if it would certainly happen.
Years passed and I started having issues with balance and it felt like my right ear was filled with water. I went to a primary care physician who treated the ear infection that I seemed to always have!
My ears felt better and I ignored the fact that I would put the television on mute because it sounded distorted; or how I would look in the wrong direction when someone called my name; or how when I wore headphones it felt as if my right ear was stopped up.
The balance issues worsened. I was seeing a neurologist already so tests were run to determine if the problem was neurological. I could not afford to see another specialist at the time.
I waited until my migraines (the reason I was seeing neurologist) were under control and more of my deductible was paid before I made my way to an Ear, Nose and Throat doctor.
By this time I was in my late 20s. My insurance was slightly better than it was when I was a child – but I had the income of a full time graduate student…it was low!
My income and insurance were significant players in my decision to seek care for my ailing ear.
My first appointment with the ENT was devastating. I recall the audiologist asking me how was I making it in my classes? I looked at this individual like huh? I didn’t do that bad on your little annoying tests!
I even asked this person why they didn’t play the noises so I could beep in. Still, in denial! I honestly thought that there was a long stretch of silence during the tests.
Even after a sound processor band was placed on my head and suddenly the stretch of silence ended – I preferred to believe that there was a purposeful long stretch of silence in the hearing test.
This belief was much better than the fact that I really couldn’t hear well.
The ENT discussed the audiologist’s findings with me and ordered more tests.
I was on auto pilot because I refused to believe that anything was truly wrong with my ears – other than the all too frequent ear infections!
That was in 2015. Once I left the doctor’s office and called/text my friends and family to inform them that “my right ear was simply decorative” – this was my description!
I cried and wondered if things would’ve been different if I had better insurance as a child or even if I went to doctor at the first sign of a problem. Then I questioned whether the ear problem was overlooked by the physicians I did see because of the much larger issues at the forefront.
Eventually I went back to the audiologist and chose the specialty hearing aid system to improve my quality of life. The hearing aid system was the least affordable option; however, it was the most convenient at that time in my life.
I’ve had the tubing changed several times since my introduction to the world of hearing aids. I’m long overdue for new tubes now.
But once again my income and insurance influences the medical care I even attempt to obtain. As I’ve shared I recently graduated and I’m on the job market with no income…this means no health insurance either.
I’m no longer in denial about my single-sided deafness; but even after all of these years the hearing aid system that was once convenient doesn’t work well for my changing lifestyle.
But most importantly the hearing aid system’s tubes are long overdue for replacement…which means I’m not using them!
Single-sided deafness has been interesting for me. It’s one of the most difficult diagnoses I’ve ever received and I’ve received many.
Plus I’m tired of individuals checking to see if I can hear anything in my right ear. Those tests are just horrible.