Category: Emotions, Psychological Stress

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
Communication with Family Connections Emotions, Psychological Stress Hard of Hearing Hearing Loss Sensory Loss Vulnerability

Grief: Hearing Loss & Healing

Join our LIVE! Workshop on Grief: Hearing Loss & Healing with Gloria Pelletier on February 7th, 6:00 – 7:30 PM Mountain time online via Zoom. (Adjust for your time zone.) 

Registration is required, here is the link. This is a Let’s Talk Tuesday Workshop.

This post is written by Gloria Pelletier (M.S.W., L.C.S.W., L.I.S.A.C.) unless otherwise noted. This is the foundation for the workshop, which explores other aspects of grief.  

“The ability to hear connects us to our world in many ways.  From treasured contact with friends and family to maximum performance in the workplace to physical safety.  Hearing provides deep and important connections that no other sense can replace.”  (Hearing.org)

“Blindness cuts us off from things, but deafness cuts us off from people,” is a moving quote often attributed to the famed 20th-century activist and educator Helen Keller, who achieved a remarkable career championing the deaf and blind. Those with serious hearing loss often cite this quote. (AARP)

Hearing loss as a stressor in many people’s lives?

Let’s explore where hearing loss occurs in the ratings of stress in society. Below is an older chart of stress which is still the foundation of many other charts for loss.  As you can see, hearing loss rates with number 6 as a “Personal Injury or Illness” with 53 points. We could also add in number 11, with change in health of family members, which is another 44 points.  (You can add other stressors together.)   

For more info: https://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

That is a huge amount of stress that is unchangeable. One cannot go back to hearing normal again and most likely will lose more hearing as we age.

That level of loss often creates grief. Elizabeth Kubler Ross’s stages of grief are well known (denial, anger, bargaining, depression, and acceptance). Now a person has gone from multiple stressors in their lives to grief.  How did they get there?

Grief isn’t always about death.

It can be the loss of communication as we know it. The inability to communicate, the very foundation of relationships, changes our lives profoundly without warning. Meaning without our permission, sometimes without an illness, without our knowledge – our ability to communicate is permanently altered. There is a sense of loss, uncertainty, isolation, not feeling safe and other overwhelming emotions.  

One of the key functions of hearing is a response to speech, the primary way we connect and communicate, emotionally and intellectually with each other.

A discontinuation of communication: 
  • Can’t understand speech with background noise
  • Need more volume to understand
  • Requests for repeat
  • Requests to speak slowly
  • Withdrawal from conversations
  • Avoidance of social situations, isolation
  • Uncertainty of our understanding of speech
  • Disruption of speech continuity
  • Muffling of speech and other sounds
  • Relationship changes

Hearing Loss is more profound and far reaching than our society has recognized.  Communication is our means to our relationships and family.  Once interrupted, how do we heal?  

Healing:

“…. acceptance takes many forms for different people, but it usually indicates some integration of the loss into one’s life. In this circumstance, acceptance may mean having all the negative feelings about one’s hearing loss while not letting those feelings interfere with relationships and daily life. When going through the stages of mourning, functioning may be affected over the short term, but the person usually will move toward some degree of acceptance. If they do not, they may need emotional support from either a therapist or a support group.”  Kaland, Mary and Salvatore, Kate  The Psychology of Hearing Loss | The ASHA Leader

Some tips that Hearing Loss LIVE! (HLL) has already expressed for healing:

Find your tribe.  Meaning find people with hearing loss that understand your situation and can relate to your experiences.

Information:  

Discover information that helps you understand your hearing loss.

  1. Take “Living Well with Hearing Loss”, an upcoming class with Dr. Ingrid McBride AuD and Gloria Pelletier, LCSW.  
  2. Lip Reading Concepts & Lip Shapes LIVE! classes with Hearing Loss LIVE! (more info)
  3. Upcoming Seminars/Workshops geared to the mental health field for hearing loss. (Chelle Wyatt,  HLL and Gloria Pelletier, LCSW)      
  4. Hearing Loss Live Series of collaboration of topics by Gloria Pelletier, LCSW
  5. Support groups: Hearing Loss Association of America, SayWhatClub and Association of Late Deafened Adults.
  6. Know how hearing loss affects your communication, relationships and ways to mediate them. 
Role Models: 

 Find an organization or person who role models for you how to live with hearing loss and have integrated their hearing loss with their lives.

Americans with Disabilities Act (ADA):  

Know your rights under IDEA, Section 504 and Section 505. Become informed about your disability and how to request accommodations.  Request loops in church, city hall, theaters.  Make sure you have your audiologist turn on your telecoil in hearing aids and cochlear implants. 

Vocational Rehabilitation Agency  

If you qualify, insist on equipment for communication, classes in rehabilitation for hearing loss, knowledgeable Rehabilitation Counselors.

Psychological Assistance

Insist your therapist or counselor has minimal requirements of knowledge for hearing loss and its effects on your communication and relationships.  There is no shame in asking for help in rehabilitation of your communication with family and society.  It is your right!!!

Art

Express your feelings and emotions through any form of art. Self expression through painting, crochet/knitting, mosaics and so much more. Creation eases some of the pain of grief a.

Hearing Loss LIVE! comments…

Chelle: Since my hearing loss didn’t come from an injury or illness (that I know of), I forget it falls into the personal injury and illness category.  Living most of my life with hearing loss, I know how it affects family dynamics. After my hearing test last month, I am experiencing some grief. (I’ll have another blog for that soon.)

Julia: Hearing loss grief affects the entire family. Open the communication channel from the get go. Tell each other what your grief looks like. Healing takes time for both of you, and that’s okay. (This too is an upcoming topic.)

Other posts you may like…

If you liked this post, learn more about Hearing Loss & Collateral Damage to see how it affects family and friends. In April last year, we posted The Emotional Side of Hearing Loss which ties into grief.

Share our blog! Help us spread awareness.

Did you like our post? Check out our Buy Me a Coffee website. Find out how you can further support us and and efforts to spread awareness.

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.

Help US Grow

If you enjoy our content and find it helpful, share it on social media. Or, consider donating so that we can keep going until our services are better established. Here’s our QR code.

Categories
Accessibility Advocacy ASR (Automatic Speech Recognition) Captioning CART (live captioning) Cochlear Implants Communication Practices Connections Emotions, Psychological Stress Hearing Aids Hearing Loss Live Theatre Public Advocacy Speechreading/Lipreading Uncategorized

Hearing Loss and Hearing Partners

Written by Julia Stepp

Who is responsible for communication when hearing loss is part of your family dynamics? The person with the hearing loss, right?

Let me ask you; as the hearing partner are you saying any of the following:

  • You are purposely ignoring me.
  • Turn that damn TV down!
  • Why are you yelling at me?
  • What do you mean the phone isn’t working right? I hear fine.
  • Are you serious? Do you really think I said that?
  • What do you mean you don’t want to go out with our friends on Friday nights?
  • I think you need to see the doctor, something is not right with you mentally.
  • Is it just hearing loss? Oh no biggie then. We’ll just get some hearing aids. Just stick’em on and good to go.
  • We just spent $8000 on hearing aids, what do you mean you still can’t hear me?

One that has stuck with me over the years during Hard of Hearing workshops: Your hearing loss is now our life.

Hearing loss affects every family member, especially when it comes to communication. Communication is the key to staying connected. There are many tools that can help you stay connected. Most families don’t find these tools until the connection is a struggle and everyone is beyond frustrated.. My hope is that this finds folks before the connection is damaged.

Some simple things that every hearing partner/family member can do:

  • Get involved from the beginning. There will be a period of time my friend Sue refers to as the “I’m not there yet” statement. When they’re not there yet, you can still work staying connected.
  • Stop talking from another room. This is good practice for everywhere, including your job, if you’ve gone back to the office.
  • Stop talking with food in your mouth. Ew. Just. Ew.
  • Make sure you’re facing them. This helps them use body language to fit with what is being said. It also helps you to see their facial expressions to make sure they understand what you are saying. 

The more important the conversation the better the outcome will be if you can follow these simple rules.

The list above is good practice to use with everyone, not just those with hearing loss. You can practice it over and over everywhere you go because one in five people you meet will have a hearing loss. Plus, practicing everywhere you go makes it a habit.

There is evidence that shows getting hearing aids from the onset of a hearing loss have better outcomes. BUT making someone get hearing aids so they can hear YOU will not work as well as you’d like unless you change some communication habits. You will be disappointed. When you are both ready for hearing aids, be involved. Keep the connection:

  • Go to the Audiologist with your partner. Learn what hearing aids can and cannot do. Help keep a diary of sounds and what your partner would like to hear. 
  • Find out why T-coils are important. Find out where loops have been installed to use with T-coils. 
  • Learn how assistive listening devices work. We all love our bluetooth, right? There are ways to use your Bluetooth with personal devices. There’s also FM systems and WiFi assistive listening options. Look for the Assistive Listening Device (ALD) symbol in venues.
  • Learn more about caption options. Apps on phones and computers, television, landlines phones, and public venues, office meetings.
  • Loops, ALDs and captions can all be used even before the person is ready for hearing aids. 
  • If certain environments are no longer doable, keep a list and brainstorm ideas on how to make it work. If Friday night is date night with friends and your local hangout is too loud, start looking for a new hang out. And if that Friday night date night is a quiet home dinner for two. That’s okay too.

And something I cannot stress enough. JOIN A SUPPORT GROUP. Support groups for hearing loss allow the person with hearing loss to connect to others with shared experience. Support groups are where hearing partners can learn how to better support hearing loss too. Don’t let the hearing loss be your life. Live life better with hearing loss. 

Another important list that has helped my family is to know signs of hearing loss. 

  • Repeating questions you have answered (them making sure they heard right)
  • “What?” A lot of whats or huhs or say that again.
  • TV is becoming louder and louder.
  • Trouble hearing on a phone.
  • Not answering questions you ask, or answering incorrectly.

I watched my grandma’s friends and family misdiagnose her as being “senile” or showing signs of “dementia.” It was during a class provided at an HLAA chapter meeting on how to recognize symptoms of dementia that helped me realize that grandma did not have dementia. She needed her hearing evaluated and more life skills to help her participate in all her extra-curricular activities

Because I decided I should go to the Audiologist with grandma, we discovered she had been using lipreading to pass her hearing tests.

Even though I knew better, five years later I misdiagnosed dementia vs hearing loss in my own spouse. (BTW, he’s not there yet. My husband may never “be there.”) He has a mild hearing loss and still lives a full life at 73. We have practiced communication skills well over 20 years. This is  thanks to the fact that I work with and have many friends with hearing loss. No one is perfect and we all slip up. Daily. However, we own it when we don’t follow the rules and move on. Usually.

Octoberfest at Snowbird this past fall.

Keep connected. Don’t let communication with hearing loss manage your life. Manage the hearing loss instead. Learn, grow and most of all LIVE your life.

PS: JOIN A SUPPORT GROUP! Find out why with us.

If you liked this post, try Hearing Small Voices because kids are hard to hearing. Also we wrote early on about Hearing Loss: Family and Communication.

(No companion podcast.)

Categories
Accessibility Advocacy CART (live captioning) Emotions, Psychological Stress Hard of Hearing Hearing Loss Shame/Stigma/Denial Vulnerability

Vulnerability

Michele: Emily Nagoski, who has a PhD in health behavior, talks about the fear of uncomfortable feelings, which is another way to say the fear of vulnerability: “One of the things I say over and over… is that feelings are tunnels. You have to go through the darkness to get to the light at the end… You’ve got to work all the way through it… [I] grew up in a family where uncomfortable feelings were not allowed, and… [I was] pretty sure that uncomfortable feelings [were more like] caves with bats and rats and snakes and a river of poison.“

Like Emily, I grew up in a family where vulnerability was demonstrated as a bad thing—something to avoid at all costs—and asking for help meant that you were weak. It took me far too long to realize that the complete opposite is true.

By avoiding uncomfortable feelings and situations, aka vulnerability, you rob yourself of the opportunity to move through it. But when you allow yourself to be vulnerable, you can move through any uncomfortable or difficult situation to figure out how to manage and take control of it. By sitting within your own discomfort over and over, you will reach a point where you no longer dread what makes you uncomfortable. Confronting uncomfortable feelings teaches you to manage the emotional and psychological aspects of hearing loss.

Another good quote: “When you shut down vulnerability, you shut down opportunity.” ~Gay Gaddis

Avoiding vulnerability is part of what causes people with hearing loss to isolate themselves. Shame thrives in isolation. When you haven’t truly accepted your hearing loss, defined your communication needs, or acquired the skill to handle situations where you feel vulnerable, hearing loss will continue to paralyze you.

The minute I embraced being vulnerable, my life changed. 

Since there seemed to be no one to teach me how to live in the world with hearing loss, I decided it was up to me to teach myself. I had no idea how to even tell people I couldn’t hear or what to call myself. Was I deaf, hard of hearing, hearing impaired? 

That is where I started. I psyched myself up and went to an out-of-the-way mall, going into every single store to practice how to tell people I couldn’t hear. I discovered labels don’t work—they don’t provide any useful information—and I had no idea of my own needs, which is required in order to tell others what I needed from them. 

My truth is that I am a lipreader and I need to see people speak in order to hear them. However, lipreading wasn’t always going to work, so I also needed to know what to do when it didn’t work.

Intentionally exposing myself to what I feared, and facing those fears in the context of experimentation, to find an effective way to inform about my hearing loss, I became desensitized to my own discomfort. Equally important was learning to define my own needs and truth.

Hard of Hearing (HoH) people need to find skill, knowledge, and confidence to combat the natural inclination to isolate themselves. Vulnerability is where those things will be found and is what will allow them to adapt to life with hearing loss. 

Chelle: Big changes in our hearing leads to life changes, turning life upside down. There’s a lot of pain that goes with the changes. I lost friends who wouldn’t/couldn’t switch from the phone to the email/text. I couldn’t cope in the salon anymore with all the excess noise and lost the one job I thought I’d be doing until I was 80 years old. Any kind of large gathering was torture. So I stayed home a lot because it was easier than:

  • Making another friend who might also decide I was too much trouble as a HoH.
  • Losing another job I might try to find.
  • Attending events, not understanding the speakers. Being the lone person sitting in a sea of people who were laughing when I didn’t understand any of it.

It was easier to stay home and watch DVDs. It was easier to read a book or be on the computer where I didn’t have to hear. However, it wasn’t where I really wanted to be. 

I isolated myself but reached out to my tribe. I joined the SayWhatClub again, because it was email and I now had several new friends who adored email too. I attended HLAA meetings in person, they had CART (Communication Access Realtime Translation) at every meeting and there I could participate. I felt less alone with them. As I shied away from the hearing world, my HoH world grew and eventually my courage in the hearing world expanded too. 

Thank goodness for my tribe. They helped me be who I was meant to be (in more ways than one). Vulnerability was me asking for CART the first time for a workshop, outside the HoH community, that I wanted to attend. Because I had support, I was able to push past the initial “no” for CART and persisted until I got it. That small win gave me courage to continue to make my communication needs known. I grew in confidence little by little.

Several years ago, Michele and I worked together on the social media team while volunteering for the SWC. We ran across Brene Brown’s TED Talk, The Power of Vulnerability. Her talk started with shame which many of us with hearing loss experience. We feel between worlds, not hearing, not Deaf. We are neither here nor there, lost somewhere in the middle. We have no place to connect. Brene talked about vulnerability and Michele and I understood this is what makes us strong. Taking chances brought us back and connected us to life again.

Years later, I read Brene Brown’s book, The Gift of Imperfection. I have notes all over the place in that book in regards to hearing loss! I highly recommend reading this book if you need to break through the shame and vulnerability barriers.

Julia: Protection. That is what comes to mind when I hear the word vulnerability. It means we must at all cost protect those we care for most. But do we take it too far? Only you and your hearing loss partner can decide how to protect each other without causing further vulnerability. But let me ask you, hearing partner, are you answering questions that they could answer for themselves before hearing loss? Are you taking control of situations they may have handled themselves in the past? Are you allowing them to stay home alone while you continue the same lifestyle you shared before the hearing loss?

Have you asked them if this is what they want? 

As a CART provider I see a different side of vulnerability. And guess what? Business owners, you are causing unnecessary vulnerability. If an employee, student, or consumer approaches you about needing live captioning, don’t automatically say “no.” This is someone who has stepped out of their comfort zone and is in a vulnerable spot. Before you decide “no”, reach out and talk with a CART/Captioning company and find out what you can about how to offer the accommodation. And yes CART is an equal access accommodation under ADA.

Stepping out of your comfort zone is scary. Saying yes when everything in your being is telling you to say no takes courage. You might even stumble a time or two, but that’s okay, because you learn some valuable things from every misstep along the way.

If you need help and encouragement to deal with the uncomfortable feeling of being vulnerable, contact us at Hearing Loss LIVE!. We’ve been there and love helping others in the ways we needed help in our own journey.

You don’t have to let hearing loss paralyze and isolate you.

View our companion podcast here.

If you liked this post, try Shame and the Emotional Side of Hearing Loss.