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You Don’t Know What You Don’t Know

Ignorance is certainly not bliss where hearing loss is concerned. Once diagnosed, the Hard of Hearing are desperate for a map to help them navigate the pitfalls and gaps that lie between what they don’t know that they don’t know and information that allows them to function in life. As patients and family members, they look to those who they assume can guide them and fill in the gaps—hearing healthcare professionals.

If you’re lucky, a lot of good information will come from doctors and audiologists—even if they don’t know everything, they should at least point you in the right direction to learn—but that isn’t always the case.

It is far too common to be left to stumble upon information on your own. Information that, had you learned much sooner, would have allowed you to better maneuver life with hearing loss.

Julia: You don’t know what you don’t know. Sounds like a duh moment, right? But it’s so true. You can’t ask the questions if you don’t know.

My grandmother wore hearing aids while I was growing up. What I didn’t know was that she was deaf in one ear and had learned to lipread as a young child. I spent my childhood, and up until my thirties, thinking she heard really well with her hearing aids. Nope. If I was on her HoH side she heard well enough. If I was on her right side, she was lipreading me.

My grandmother’s last drop in hearing happened about ten years into my career as a CART provider. By this time I had learned not all audiologists are the same. Not all hearing devices/hearing aids work the same. I learned that family members often have the wrong perception about hearing loss and hearing devices.

What I wish I had understood back then; it’s not about volume, it’s about understanding. Clarity.

Hearing partners assume….a lot. I have heard over and over from hearing family members, “They still can’t hear me.” The hearing person doesn’t know all the limitations that come with hearing devices. How can they? The person with the hearing loss is trying to figure out what it is they need because they weren’t told either.

Here is what you don’t know, hearing friends. You need to take ownership for your end of communication. The key is to come up with a plan together. If you are trying to talk from separate rooms. Stop. Seeing is hearing, and if the HoH can’t see you it will only frustrate both of you. Sit down and make a plan. If your favorite restaurant plays blaring music, they will not hear you as well. Sit down and make a plan. You think the hearing aid or cochlear implant will change it back to the way it was before the hearing loss. It doesn’t. It takes two to make it work.

As a hearing person, I want you to read the information below, see if it helps you understand the other side. Then make a plan, and think how you can help to navigate the choppy waters of hearing loss. Because what I didn’t know, and I continue to see in couples, is that hearing loss not only affects the person with the hearing loss. It affects you too. Take the journey together.

Chelle: I didn’t know how much high frequency hearing loss affected speech. I have a profound high frequency hearing loss meaning specific sounds are completely missing, hearing aids or no hearing aids. If you look up a speech banana, I am missing T, TH, S, F, K, P, H; with and without hearing aids. Once I learned that, it made sense why I hear voices but had a hard time understanding words. Words have holes!

I didn’t know I was lipreading. I knew I was watching the faces for clues but I didn’t think I was lipreading for real. When I took my first lipreading class at DSDHH in 2010, I felt inadequate. The harder I tried, the worse it got. I didn’t give up, I went again and again. Later I taught the class feeling like a phony but each time, certains lip shapes and strategies sank in. I was lipreading and had been all along! Learning to relax is the biggest issue. I’m not as good as Michele but I get my 30% worth which adds up.

I didn’t know hearing aids had limits. This would have been a valuable piece of information a long time ago. Everyone in my life thought once I got hearing aids my hearing was fixed, including me. A big takeaway was learning hearing aids work best within six feet. If people are farther than that, it starts getting harder to understand. They are hearing aids, not hearing miracles.

I didn’t know much about assistive listening technology or other accommodations. Assistive listening systems are great for hearing at a distance. Public venues have to have assistive listening devices per the Americans with Disabilities Act (ADA). There’s a symbol for that but no AuD had ever told me about that either, I learned from peers. After the last big hearing drop, assistive listening technology didn’t work as well and I needed more for participation. CART/live captioning enabled me to participate like everyone else. Again, I learned from peers.

I didn’t know how big a difference self-advocacy could make. Once I learned all of the above, I was able to tell people what I needed to make communication easier. Now I say: 

  • I use lipreading so I need you to face me. 
  • My hearing aids don’t work well from other rooms. 
  • You have to get my attention first for lipreading.

Michele: I’ve had hearing loss for over five decades. There were a lot of things I didn’t know throughout my childhood years.

I didn’t know…

  • what I heard was not what everyone else heard.
  • I knew how to lipread until the doctor who diagnosed my hearing loss told my mother I was lipreading everything he said.
  • I should tell people that I had a hearing loss or that I could advocate for myself.
  • faking it was not a good idea.
  • the reason I was exhausted every day after school was because of listening fatigue.
  • there were others out there like me.

Then, at age 21, I tried my first hearing aids. Maybe I was naive, but I assumed my audiologist would be the expert on hearing loss and hearing aids. If there was information I needed to know, certainly my audiologist would be the source, right?

I didn’t know…

  • what to realistically expect from hearing aids. I thought they would help me hear clearly the way my eyeglasses corrected my vision. When they didn’t, I felt like there was something wrong with me. No audiologist explained their limitations.
  • why sound hurt. I asked every audiologist I saw about this and got a different vague answer each time.

It took a long time to find real, usable information and most came later in life from my peers. I joined the SayWhatClub (SWC) in 2008 at the age of 48. I was blown away by all of the information I got from others with hearing loss.

I didn’t know…

  • hearing loss groups existed, because when I asked my audiologists they didn’t know of any.
  • I should shop around for an audiologist and compare hearing aid pricing due to the drastic difference in mark-up.
  • recruitment or hyperacusis could be why sound was so painful. I was diagnosed with severe hyperacusis at the Mayo Clinic in 2010.
  • about accommodations for the HoH. I had my first CART (Communication Access Realtime Translation)/live captioning experience in 2010.
  • I would benefit more from volunteering than the people I was trying to help.
  • self-advocacy would change my life so drastically. That it would help me define my needs, take control of my hearing loss, and teach me to be direct about what I need for communication.
  • my experience was just as valid as someone who is a part of Deaf culture or who benefited from technology.

Our sense of hearing informs every aspect of our lives. When you lose the ability to hear, you and your family members need a clear path to the information that will allow you to continue to function and communicate in every area of your life. What you learn from hearing healthcare professionals helps, but there is far too much left up to you to figure out on our own.

We want to encourage audiologists and service providers to set a new standard that includes aural rehabilitation for their patients and clients. A step that would take some of the mystery out of learning how to manage hearing loss by providing a more therapeutic approach to retaining quality of life with hearing loss.

No HoH person should have to make the journey alone.

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