You Don’t Know What You Don’t Know: Hearing Loss

A few of us experienced HoHs (hard of hearing people) got together to discuss hearing loss and our discoveries along the journey. Deep in the discussion, we began to talk about how much we didn’t know until we met other HoHs. The journey starts solitary and our hearing professionals were of no help early on in our lives. We learn by trial and error, through embarrassment and if we are lucky, from others with hearing loss.

Michele:

Flunking the public school hearing screening in the 1960s didn’t mean much to me, because I had no idea that what I heard was not what everyone else heard—quite typical for someone who loses their hearing gradually and progressively, no matter your age.

Here are a few more things that I didn’t know that I didn’t know from childhood:

  • My brain could work wonders to compensate for my damaged auditory nerves—fine tuning my lipreading skills and filling in the blanks of what I missed in other ways.
  • I didn’t even know that I could lipread until the doctor who made my diagnosis in grade school told my mother, “She has likely had a hearing loss for years. She is lipreading everything I am saying.” 
  • I was clueless that the reason I could never keep my head bowed while my Sunday School teacher prayed—I was admonished when I was caught—was because I needed to look up to watch her speak in order to understand what she was saying. I wasn’t simply being defiant, I was lipreading.
  • I didn’t know I needed to advocate for myself. Even if I had, I wouldn’t have known what that looked like, because I didn’t know anyone else like me. I didn’t know I wasn’t the only one.


It took looking back at my childhood from my early 40s to recognize some things were even related to my hearing loss.

No one suggested hearing aids, and I was left to figure out my hearing loss on my own for my entire childhood. I didn’t see an audiologist or have another audiogram, outside of public school screenings, until I was married. I tried hearing aids from 1980 through 2009. That is almost three decades of relying on audiologists—who I always had considered experts—to teach me everything I needed to know about my hearing loss, hearing aids and anything else that was available to me. It wasn’t until I joined an online hearing loss support group at age forty-eight that I realized how my audiologists had failed me. None of them had thoroughly explained the particulars of my audiogram, outlined realistic expectations of what hearing aids could do for me, or steered me toward services or equipment that might help me cope better. I even discovered that I have severe hyperacusis (officially diagnosed at Mayo Clinic in 2010) through my own research.

Chelle:

As a teenager I started  losing my hearing and in my early 20’s I got my first pair of hearing aids. As of now, that’s 30 years of hearing aids with 6 different brands. With all those audiologist visits and all they did was sell me hearing aids or tweak my programs (more when digital hearing aids came along).  For over 15 years not one audiologist offered me information on support groups. The biggest thing they never told me was that my hearing aids did NOT fix my hearing loss.

  • Everyday I struggled to hear at work.
  • Quite often someone would ask me if my hearing aids were on when I asked for a repeat.

It  left me feeling inadequate and like it must be my fault somehow. I shied away in social situations and my young kids would often help me hear, translating what was said. Why did I understand my kids more than adults?

Through my own efforts, I found support groups for hearing loss where I found new resources and learned:

  1. Hearing aids work best within 6 feet. That’s why I couldn’t hear from other rooms even with my hearing aids on. I learned this many years into wearing hearing aids from my state Deaf and Hard of Hearing Center.
  2. Hearing aids work best in quiet environments with good acoustics. The room could be quiet and I might still have a hard time if the acoustics are harsh. Reverberation (tiny echoes) aren’t something hearing aids can process well unlike normal hearing. Again learned through classes at my state Deaf and Hard of Hearing Center.
  3. No audiologist explained my speech discrimination scores. Without hearing aids or my eyes I had a 30% word discrimination. With my hearing aids and without looking my hearing aids gave me a 60% percent word discrimination. With my eyes and me being able to lipread, I got 90%. Me lipread? Yes, I use lipreading even though I didn’t know I was doing it for years.   I learned this reading a book, Missing Words, many years later also.
    1. None of them told me I had lost certain consonants due to being profound deaf in that frequency range. That’s why the words I heard had holes and why it remained difficult for me to understand speech.
  4. I used lipreading as a natural instinct. Learned after taking the Speechreading class and then teaching it over and over. Hindsight.  

Sometimes we don’t know what we heard was wrong, which happens to us all.

Virginia:

While working for one of the top twenty private companies in America, I was sitting in a management meeting when the president of the company directed a question to me personally.  I answered the question, there was no further comment, and the meeting continued. Afterward I went back to my office, my boss walked in and said, “You know you really embarrassed yourself when you answered that question. I was devastated and humiliated. Apparently I had misunderstood the question and answered inappropriately. From that time forward, whenever I’m in an important conversation or ask a question that’s obviously noteworthy, I will repeat the question back to the speaker to confirm my understanding before commenting or answering any questions. I never want to assume I understand what’s being said in that kind of environment again.

Once we all learned more about our hearing loss, we felt like years were wasted, diminishing ourselves and taking the extra burden of communication with a dash of shame thrown in. Hearing aids were the only option we were given without knowing their limitations. Once we found each other we learned alternative solutions and better self-advocacy skills.  We could have been more successful with our hearing loss earlier in life if we had been given more tools by our hearing professionals than just hearing aids, or least pointed to one of several support groups.  

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