Categories
Emotions, Psychological Stress Hard of Hearing Hearing Aids Hearing Loss Mental Health & Hearing Loss

Grief For A Little Drop in Hearing

by Chelle Wyatt

Last month I shared my most recent experience getting a hearing test, Hearing Tests: Mixed Emotions. The red & blue lines on my audiogram have mingled together in the past but this time, my red line took a step away from the blue one. My word discrimination went from 60% to 40% in that ear, with amplification. The audiologist said, “It’s only a little loss.” True, it’s only a step down but I certainly feel the grief for that little bit of hearing loss.

Among the hard of hearing (HoH) tribe we all fear hearing tests. When I told people I was going for my hearing test appointment, my HoHs checked on me before I went in and wished me luck. They asked me to touch base with them after because they know every little drop in hearing counts. We collectively hold our breath until we get results. They will congratulate me if there’s no change and they sympathize if there is a change. 

A Small Drop in Hearing Explains Big Differences

When the audiologist told me it was just a small drop, it wasn’t that small to me. Right away it explained a few things that have been happening. When I sleep on my left side, sounds fade away. This is not a bad thing perhaps…unless there’s some emergency.

When I’m driving and someone is talking to me from the passenger side, I can’t just listen. I lean over the center console to get closer to the passenger, stealing glances for lipreading (this is with hearing aids in). This is not safe and there’s been a few close calls while trying to “hear” passengers. This new hearing test proves casual conversation in the car is not doable. That’s grief. People like to talk. I’m going to grieve that little bit of hearing loss.

living room picture, tan recliner forefront, another chair back right and the couch to the left. Two big windows
Living room setting, my tan recliner.

In the living room, I sit off the left side of the couch in a recliner. That means my right ear points toward the couch. Not long ago, my husband accused me of tuning him out while watching TV. “I’m not, it’s just that all sound becomes background.” Looking at my current hearing test, that is an aha moment.

It adds up. I’m not shocked yet I still feel the stab of grief. It’s not a wave washing over me like the big hearing drops in the past. I’m thankful it’s not that. However, it creates a ripple in my life. It doesn’t just affect me, it affects my husband who has already confessed he misses casual conversation while watching TV.

The Tribe Understands the Grief

The HoH tribe understands this. That’s why not long after I got home, they were the first ones texting me asking for the results. They didn’t just ask me how much I lost, they wanted details. What was my word discrimination? What brand of hearing aid was suggested? Could I get colorful hearing aids? (Love that one because I will get color again.) Those in the tribe without hearing loss also checked in shortly after making sure I wasn’t knocked out of the ballpark again.

People outside the tribe say, “At least it wasn’t a big drop. Glad you’re getting new hearing aids.” The subject changes because they can’t know what it’s like until it happens to them. Maybe this is because I handle my hearing loss well these days. That doesn’t mean I don’t break down, that I don’t feel the loss. I keep putting one foot in front of the other.  

The support from the tribe is comforting. It helps me to talk about it with them; the test, the brands and oh crap! Did I really forget to get my word discrimination scores?! And a copy of my audiogram?! I lost my senses… 20% more of my hearing. The following week I went back to test the hearing aids again and choose a brand. That time I made sure I had a copy of my audiogram with all the information.

Without chatting with my HoH friends, my grief might not have been understood. I greatly appreciate the tribe for this reason and more. This is why I encourage people to find other HoH friends. It helps immensely. I’m not devastated with this little drop in hearing. I’m not lost either, but there went a little more hearing… Again.

Can you hear my big sigh?

There are 48 million Americans with hearing loss. Some of us have found the tribe through community groups, however I still find many who feel alone with hearing loss. The SayWhatClub and our local HLAA chapter had my back with the last big drop in hearing 13 years ago. Without them, I would not be where I am now. I want everyone connected to that kind of energy.

Connection Suggestions

Join the Hearing Loss LIVE! monthly Let’s Talk About It chats. Every month we have a different topic. We encourage participation but together we are better.  

Try social media. There’s more than ever out there.  There’s so many ways to connect with social media; Reddit groups, Facebook groups, Instagram, Twitter, LinkedIn and more. Connect online, then attend a hearing loss convention. 

My favorite is the SayWhatClub annual convention. They were there for me in the beginning back in the late 90’s and they are still there. Their conventions are small and intimate so we get to know each other. I’ll be presenting a workshop for them this year in Vancouver Canada: Technology for Communication with Hearing Loss. More information on that soon. 

Reminder

The tribe is hard of hearing, but it also includes faithful hearing partners. Let’s also be sure to include our wonderful CART providers and dedicated providers of assistive listening. It’s those who provide hearing instruments and give us all the resources and knowledge we need to be successful. (See our visit with Dr. Ingrid McBride.) It’s anyone who tries to spread awareness about hearing loss and communication needs. 

Categories
Hard of Hearing Hard of Hearing Defined Hearing Loss Mental Health & Hearing Loss Sensory Loss

Being Comfortable with Hearing Loss

What’s your comfort level with hearing loss? 

Is it possible to be comfortable with hearing loss?

Chelle talks about shame and how she got over it. Julia covers the hearing side because hearing folks aren’t always comfortable with hearing loss.

Being comfortable with hearing loss means different things to different people. You can explore this topic with us all month with this blog, a podcast and through our YouTube channel.

Register for our workshop January 3rd from 6:00 – 7:00 PM and share your ideas with us. Can’t attend that night? We will have a presentation with workshop info available on our YouTube channel shortly after the event for a limited time. (PS: We think the live events are better because of the participation.) 

What Being Uncomfortable with Hearing Loss is Like

Chelle: Being comfortable with my hearing loss is something I struggled with for years. There were several years I hid it. Why? Because I was 23 years old, too young to wear hearing aids. My then husband teased me telling me I was a defective model. He might have to trade me in. He used to turn the captions off on the TV because they were in his way. When repeating, he could be nasty about it and he would use my hearing loss to his advantage. With all that, it’s no wonder I was uncomfortable with hearing loss. My thinking was that everyone thought the same as him; my hearing loss was a pain in the ass. (Side note: we got a divorce.)

It took time to unlearn being protective and fearful about hearing loss. That came step by step with my next husband who was also my best friend. He didn’t mind my hearing loss or my captions. Repeating things was no big deal for him, he did so easily. He was good about cluing me in on situations. At first I was horrified about how open he was with others about my hearing loss. However, this is how I learned most people were willing to work with me. Thanks to this husband, I stopped hiding my hearing loss.

You Don’t Know What You Don’t Know

Even though I was much better about telling people I had hearing loss, I wasn’t able to share best communication practices. I didn’t know what I needed. Conversation was hit and miss and could be very frustrating, even with my hearing aids.

17 years into hearing loss & hearing aids, still fairly clueless about accommodations.

Then came the next big drop in hearing. Here’s where I hated my hearing loss. This was no-man’s-land. Nowhere close to hearing and not Deaf either. I was lost and angry. If I couldn’t be hearing again, let’s just stab my ears with a pencil and be done with it.

Yes, I really thought that and expressed it out loud once. My husband never forgot that statement. No one seemed to understand hearing loss. Here’s new hearing aids, you’re all better now. I was not all better. In fact, there were times when I was entirely stuck. I made it my mission to learn as much as I could about hearing loss, hearing aids and more. Anything. Everything that might help and it did help.

Having a Tribe Behind Me

The SayWhatClub helped me a lot over the years. This is their 2022 convention picture.

After a few years, I learned how to live with my current level of hearing loss. Thanks to some of the best people I know, who also have hearing loss, I learned more about my communication needs and the available accommodations. They helped me find my place again in the world. With their help, I learned to be comfortable with my hearing loss. Even though my hearing still sucks, I actually “hear” better than ever because I learned how to be proactive. I learned to be successful with and without my hearing aids.

Hearing partners need to be comfortable with hearing loss. 

Julia: When hearing partners are not comfortable with hearing loss, we set unachievable hearing communication goals. An example:  “You need to go get hearing aids so you can hear me better.” It’s not you vs me, it is a “we” thing.

Twenty years of attending hearing loss support groups as a hearing partner has taught me to have a conversation about hearing loss. We have to have several conversations to become comfortable with hearing loss. We have to be comfortable with communication adjustments that will be worked on together.

Julia and her husband with their son.

What works for us

My husband has had a mild hearing loss for 8 or so years. It has not progressed. He does not wear hearing aids and that’s his choice. I support his decision. The sounds my husband is missing do not affect his quality of life. When/if he gets to the point he wants hearing aids, we will have a conversation to work on communication and being comfortable with the next change. 

Right now when he needs extra volume for understanding, he uses his noise canceling bluetooth headphones. We tried a few different brands and wound up with Blue Tiger as his favorite. He has one pair he uses with his phone and another pair for television. 

Julia with her family at an outdoor event.

Our outdoor adventures are not hearing aid friendly. He enjoys planes, trains and automobiles and dreams of becoming a mountain man. Black powder rifle and all! For him outdoor hearing protection is what is needed to protect his hearing from further loss.

Communication rules are by far the best way, in my opinion, to get comfortable with hearing loss. We started using them long before hearing loss was part of the marriage equation.

If I:

  • Get his attention: We’ve been married almost 30 years. That means we do a lot of “uh-huh” marital bluffing that has nothing to do with hearing loss.
  • Face him the whole time: This way I can tell if he is understanding what I’m saying. He can watch my facial expressions and listen to my tone to better understand the conversation. Yes, it turns out I have a “no bluffing look.” We are talking 30 years folks, 30 whole years.
  • Be within six feet: Outdoor activities can be tricky with this rule. Try some different scenarios if you like talking and walking. We do a lot of “uh-huh” here too. We may have one or two dogs with us too. One of us is in front of the other person/dog so we fit on the sidewalk. Odds are the conversation is with the dog not each other. (Did I say we’ve been married almost 30 years?)

The key to being comfortable is in the “we” for us. Is it perfect? No. But because the subject of hearing loss is comfortable for us, it’s not the elephant in the room and together we can have better communication outcomes for the next 30 years. Well at least when it comes to hearing loss.

In the end…

The more we know, the more we can successfully manage communication situations.. Have those talks with your hearing partner! There will always be new situations that throw us off. Talking through those rough spots together will smooth out the process in the future. Explore accommodation options together. The more both partners know about accommodations, the easier it will be to manage situations. 

Finding others with hearing loss is a great way to trade ideas, tips, tricks, technology and so on. It’s also wonderful to have friends with hearing loss to compare notes. There are 48 million people with hearing loss out there so we are not alone. Open up about your hearing loss with someone, share your stories. Let’s make hearing loss more known and acceptable.

If something resonated with you in this post, share it with someone meaningful.

Want to explore more? Check out Being Proactive with Hearing Loss. It might also be a good time to read Hearing Loss and Hearing Partners.

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Categories
Communication Practices Emotions, Psychological Stress Hard of Hearing Hearing Loss Mental Health & Hearing Loss Personal advocacy

Hearing Loss and Collateral Damage

With Gloria Pelletier, LCSW, LISAC

Hearing Loss LIVE! teams up with Gloria Pelletier to take another look at the mental health side of hearing loss.

Collateral Damage Definition: Injury inflicted on something other than an intended target.

How does collateral damage apply to hearing loss? 

Hearing loss hurts us in unknown ways. It also unintentionally affects the hearing people in our lives. This is especially so when we are not upfront about our hearing loss. 

A smiling white lady with long silvery hair.
Gloria Pelletier

Gloria: “Collateral Damage” is a term I first heard in The Veterans Administration when I worked there as a social worker.  Our Veterans are trained NOT to have collateral damage. Not to kill those other than the intended target. 

How does it apply to hearing loss?

Chelle and I were talking about how often those around us do NOT modify their behavior to help us hear.  I got a real eye opener when I spoke to Chelle with my back turned to her, then later she spoke to me with her back to me.  We were laughing because here are two educated individuals on hearing loss doing EXACTLY what we tell our family NOT to do. Since neither one of us lives with another person with hearing loss we are used to speaking to hearing people, making the same mistakes they make.  

Loss of Casual Conversation

It seems so simple to ask for our family and friends to accommodate our hearing loss. It didn’t make sense to me why they did not or refused to. After my afternoon with Chelle making the same mistakes it became apparent to me that modifying one’s behavior takes thought, focus and perseverance. Too many times we think communication is easy and we don’t need help in learning to communicate. We have been speaking since infancy!  

Speaking and communicating are two vastly different concepts. In order for me to communicate with you, for us to have a two way conversation; I am going to need some modifications.  When I am not honest about those needs I essentially make sure you cannot effectively communicate with me. This is collateral damage.  

Bluffing does no one any good.

Our hearing partners have no concept of our needs so they continue on speaking to us as if they are having a casual conversation.  When I nod my head as though I understand. I have denied my communication partner true access to me. (This is collateral damage.)  I have made an unilateral decision NOT to communicate in a clear and understandable way.  

I did not ask the other person if they were OK with that, I decided my personal issue was more important than their ability to communicate with me. By being very clear and upfront with our conversation needs, we are truly communicating with someone and being respectful of their right to communicate with me. I have given them the tools to be successful. The environment may need to be modified but we BOTH agree on how that is done.

Another example of collateral damage: I watched a man dominate a group of people with his hearing loss. He complained he couldn’t hear, that he needed a one to one conversation.  He insisted the whole group accommodate his hearing loss. That in of itself is not a problem. 

What was the problem? 

He did not give the group information on how to communicate with him so he could successfully integrate into the group.  His own frustration with communication and lack of knowledge about his own needs created a strained group dynamic. (This is collateral damage.)  I watched the whole thing unfold, an unwilling participant to this dynamic.  He was angry, frustrated and demanding that others communicate with him without consideration for their ignorance on how to do that.  (More collateral damage.)   

When HOH folks are more proactive, a clear statement of accommodations alivates all the stress in the group. We then can have good communication and relationships with others on terms we can function in.  It is OUR responsibility to be proactive with our needs and to give others the information they need so communication becomes accessible. 

Hearing Loss has unintended bombs

Chelle:  When Gloria introduced this topic, she had to explain it to me. Collateral damage??? Once I understood, I could see the silent ‘bombs’ that go off beind us. Boom…Boom!!

With my first pair of hearing aids fitted and adjusted, they told me I would hear a lot better. That wasn’t the case. I don’t think they realized how noisy hair salons were. Some of the collateral damage I remember coworkers was:

  • Are your ears in?
  • Turn up your hearing aids!

I couldn’t combat these hurtful remarks. I felt ashamed because I wasn’t living up to the standard. I retreated further in my shell.

Hiding hearing loss has consequences.

Back then, I was not honest about my hearing loss, I hid it because of that shame. People would try to talk to me when I wasn’t looking and I’d walk by without acknowledging them. They didn’t know about my hearing loss so I was considered rude & a snob for several years. (Boom!)

There were also ‘friends’ who liked to have fun with my hearing loss. While out gambling in a casino (loud music, slot machine background noise) some guy was showing interest in me and I was unaware playing video poker. My hearing friends told him to ask me for something ‘unsavory’ for a little fun. I heard him talking, looked up, he asked and bluffed, nodding my head. (Boom!)  That taught me to ask for repeats no matter what.

What else changed?

After 18 years and a big hearing drop, I educated myself. Thanks to the SayWhatClub and our local HLAA chapter I learned healthier communication strategies from my fellow peers. I learned how to reply to those comments above too. My answers are:

  • Are your ears in? Yes they are. They don’t work well in noisy environments. You need to get my attention before talking for less repeats. 
  • Turn up your hearing aids! With my hearing loss, it’s not volume so much as it is clarity. Hearing aids aren’t called hearing miracles for a reason. They help but they don’t replace true hearing. Please face me while talking, that helps a lot. 
A white lady on a snow mountain side in black ski clothes. She has a pink ski hat on with goggles raised up on her head.
While skiing, collateral damage would be other people assuming I can hear them saying “To your right” or “To your left” as they ski past. That’s a fear of mine. – Chelle

Hearing Partners Experience the Loss Too

Julia: “Emotional side of hearing loss” is a catch-all phrase, and there’s a lot that goes under that umbrella. Collateral damage fits in there with grief, and other feelings.

Hearing partners experience collateral damage too. It was the day we were hurt because we knew the person bluffed. It was the day we realized we could no longer whisper sweet nothings in our partner’s ear. It was the day casual conversations in the car disappeared. It was the day we struggled communicating our message during a phone call.

During our podcast, it dawned on me that the largest piece of collateral damage that happens with hearing loss is watching our elders mishandle it. 

Anger and Impatience

Our behaviors, good and bad, are contagious…

  • As a hearing person and I am modeling anger and impatience with hearing loss, I encourage others to do the same. 
  • If I am refusing to work towards productive change, I’m encouraging the same behavior. 
  • If I show impatience waiting for you to hear/understand, because it takes you a minute to hear… 

If I do this, I show others that hearing loss is a hassle. Here is more collateral damage.

Two white ladies, one younger and the other older. The younger lady with light brown hair pulled back is smiling and focusing on the camer. The older white haired lady is smiling and more relaxed. Palm trees int he background.
Thanks to being involved with the HoH community, Julia knew how to help her gma with communication needs.

As hearing partners, we can change this pattern. Let’s start working together with communication needs to have better relationship outcomes. Let’s find healthier ways to learn from the past. Collateral damage will happen. You can’t stop it. But we can minimize the damage. We can acknowledge the harm and work together for better experiences.

Above all else, let’s continue to look under the umbrella that I call the emotional side of hearing loss. Together we can create a community. With a community, we can bring about change. With change, we can create better understanding around hearing loss.

For those with hearing loss, help us help you. Disclose your communication needs. Let your friends and family know. Let your coworkers know because a lot of collateral damage happens there too. Trust this next step in life with hearing loss so we can all do our part. 

Own Your Hearing Loss

Michele: I hate to say it, but the Hard of Hearing often create a lot of problems for themselves by not owning their hearing loss or continuing in denial.

The back of a silver haired lady sitting at a desk with two computers. It's an online meeting on one of the computers.
Michele giving a presentation on being proactive while traveling with hearing loss.

While doing research into how to get audiologists on board with empowering patients, I connected with an audiologist practicing patient-centered care who found it a hard question to answer. They went on to explain their frustrations in dealing with patients every day who are fighting the stigma of hearing loss and are hesitant to move forward with even the most discreet hearing aids. I was surprised to learn that it is pretty rare to have patients who are accepting of their hearing loss, good self advocates, and emboldened to share their struggle with their friends and family. Collateral damage cuts many ways.


When we are not proactive in dealing with our hearing loss, we set the stage for collateral damage. The best thing we can do for ourselves, our family members, friends and all others we encounter in life is to learn how to tell them exactly what they need to know about our hearing loss and our communication needs. Not everyone we tell will do their part, but when we do our part we plant the seed for all of us to do better. 

Podcasts

Watch our companion podcast on our YouTube channel with captions. You can also find us on several podcast platforms (BuzzSprout with a transcript, Spotify, iHeartRadio and more) by searching Hearing Loss Live.

Other posts/podcasts you might enjoy…

If you liked this blog post, check out our other collaboration with Gloria,  Mental Health Myths in Treating Hard of Hearing Clients. Another good one might be our Vulnerability post. Disclosing our hearing loss and communication needs can be scary but it’s how we grow.  

Join Our Twice a Month Newsletter

We have a twice a month newsletter. We add tips on being proactive with hearing loss with experiments for you to try in daily life. You can sign up for our newsletter on our events page, scroll down a bit.

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Categories
Communicating with Hospital & Medical Staff deaf Education Hard of Hearing Hearing Loss Mental Health & Hearing Loss

Mental Health Myths in Treating Hard of Hearing Clients: With Gloria Pelletier

Our guest this week is Gloria Pelletier, a Licensed Clinical Social Worker, who has become a great connection for us here at Hearing Loss LIVE! She brings a wealth of understanding about how hearing loss and mental health have a long way to grow together. Watch for our ongoing series with Gloria where we will unpack more misconceptions as it correlates to hearing loss and mental health diagnoses.

Change the Therapeutic Milieux
Gloria Pelletier

Gloria: With my last, large hearing drop I no longer could communicate effectively. I could speak but I couldn’t hear what others were telling me. I could still read lips, sort of, but not enough to be able to understand communication.

I decided to go to a mental health professional to learn how to deal with my drastic hearing loss. Unfortunately, what I found was that the experience of losing a sense and the resulting consequences was not well understood in the mental health community. I was given many different diagnoses in an attempt to define my experiences. None of which were accurate. I began to ask my community circle if they had experienced the same phenomena. I did a small survey of those who were doing therapy and no one made any accommodations for hearing loss or understood that there were some adaptations that could look like or were similar to other DSM ( Diagnostic and Statistical Manual of Mental Disorders) criteria.

After a quick literature search it became apparent that this was a common occurrence for Deaf individuals. I was talking to Chelle about the misperceptions in the mental health field and this is how the podcast was born. It is imperative that Hard of Hearing (HoH), deaf, late deafened, Deaf, etc., are understood within the mental health community so that we can get the appropriate treatment.

Hearing loss and the consequences of losing a sense is well understood medically. What is lacking is understanding of how that impacts the HoH emotionally. What does that look like in everyday living?

With the help of Vocational Rehabilitation we explored the technology available now which would assist me in continuing to do therapy. With technology I can communicate with the hearing, and HoH community effectively. I can still do what I love.

My goal is to increase the knowledge within the therapeutic community’s understanding of hearing loss, the consequences and how best serve those with hearing loss. To deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

I lost my hearing, I didn’t lose my abilities. I have the same abilities I had before, except hearing. There are ways to live with hearing loss that will augment my skills and understanding. Let’s work together to find those, make them known and assist others in knowing hearing loss can be an adjustment not a disease.

Julia: In our Podcast with Gloria you will hear the acronym “DSM.” This stands for Diagnostic and Statistical Manual of Mental Disorders. The American Psychiatric Association is a great place to learn more about DSM and its role in patient diagnosis. 

I don’t know about y’all, but as a kid “mental health” was a dirty word. Almost as dirty as the word “hearing loss.” Mental illness meant you couldn’t perform a job the way a normal person could. Hearing loss meant you couldn’t perform a job the way a hearing person could. Mental illness meant someone unstable who might say something inappropriate. Hearing loss meant someone unstable who might say something inappropriate. 

People around the country are working hard to change the stigma of mental health disabilities and therapy. Thank goodness. But the work is still in its infancy in my opinion. Hearing Loss LIVE! is working to change the stigma of hearing loss disabilities. Thank goodness. But here too the work is still in its infancy.

All patient intake forms should have a section related to hearing loss. 

  • Have you been diagnosed with hearing loss?
  • Has your hearing changed recently?

And so on.

Chelle: With hindsight and new awareness, I’m sure I had hidden hearing loss as a teenager. 

  • Though I could hear in the classroom, I couldn’t hear in the noisy hallways between classes. 
  • I hated being in the backseat of cars because I couldn’t understand what people were saying. I had to lean forward and hang my head in the front seat to hear. 
  • People couldn’t talk to me from another room without a repeat. 

Tinnitus at 18 was suggestive that I might have hearing loss but the audiologist said my hearing was within the normal range. Five years later, I was wearing hearing aids with a more obvious hearing loss.  

Chelle, mislabeled as a typical defiant teenager

Instead of suspecting hearing loss, I was a “typical teenager saying huh” all the time. Or a defiant teenager for not paying attention and mirroring anger with people who were impatient repeating. Years later, I found out while attending a high school reunion people thought I was stuck up, or antisocial.  

These days there are hearing tests for “speech in noise”. When I was a teenager, that wasn’t an option so we just didn’t know. Hearing loss is more prevalent these days. One in five teenagers experience some sort of hearing loss. In a class of 30 kids, that is 6 who may experience hearing loss. If a teacher has five classes a day, that’s 30 kids a day with a possible hearing loss.  

Gloria and I discussed this a couple of months ago. I remember the silence as we both processed this new awareness. There aren’t regular hearing screenings in schools so how long does hearing loss go undiagnosed? How many teenagers are labeled as antisocial? Defiant? Maybe even ADD for not paying attention. Are we checking their hearing?

Michele: I recently stumbled onto the empowEAR Audiology Podcast hosted by Carrie Spangler, Au.D, CCC-A, who has hearing loss herself—she was implanted with a cochlear implant in November of 2019. NOTE: Transcripts are available, however, the ASR (automatic speech recognition) captioning isn’t corrected. You know I’m going to contact them about that.

In episode #40, Dr. Spangler’s guest is Matt Hay, a 45 year old man who began losing his hearing his sophomore year of college. He was diagnosed with neurofibromatosis, type 2 (NF2), and underwent an auditory brainstem implant (ABI – 12 electrodes connected directly to the brainstem in the area that processes sound) just after it was FDA approved in 2000. Matt woke up from the surgery with facial paralysis, he couldn’t walk, and had double vision, not to mention all the work it was going to take to learn to hear again with the ABI.

In reading the entire podcast, what struck me most was that Matt had all kinds of physical rehab and therapy, but not much on the hearing loss side that addressed the emotional and mental struggle we all go through. He talks about the things it took too long to learn—self advocacy, realizing you can question professionals, because they don’t always know best or have answers, and the fact that nobody ever came to him and said, “Hey, we have this training that can help you.”   

Matt found himself explaining his frustration to everyone, even his doctors: ”And I remember being so frustrated and saying like, you just don’t get it. You don’t understand why this is hard, why it’s exhausting, why it’s lonely, why [I] can be surrounded by this support and still feel totally on my own and alone.”

Unfortunately, doctors, therapists, and the other medical professionals who treat us, have not been trained to understand hearing loss.

During a follow-up hospital appointment with CART/Textual English Interpreting—I requested CART for the first time for a procedure I had done last week—the Nurse Practitioner was amazed at how well CART worked. She was very curious and asked a lot of questions about it. One thing I made sure to tell her is that without an effective way to communicate, people with hearing loss can exhibit behavior that is misinterpreted as mental health or cognitive issues.

Why the Hard of Hearing might be misdiagnosed or mislabeled:
  • Staring at a speaker’s lips while lip/speech reading can come across as intimidating.
  • The intense concentration it takes to understand speech is often misinterpreted as anger.
  • Needing more time to process information, mispronouncing words, or the confusion resulting from ‘bluffing’ can be misinterpreted as a cognitive disorder or learning disability.
  • Poor voice modulation leads to a client or patient being flagged as depressed or having a health disorder.

Can you think of others?

We are so happy to support Gloria as she works to increase the therapeutic community’s understanding of hearing loss, and to deconstruct the myths and misconceptions that create confusion for both the practitioner and the client.

Watch our companion podcast with Gloria here.

If you liked this topic, try the Emotional Side of Hearing Loss, there are a lot of emotions that take time to process. Meaningful Connections with People is another good one. Gloria is a wonderful addition to our meaningful connections.

If you enjoy our content and find it helpful, please consider donating so that we can reach more people with hearing loss to help them help themselves.