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 unpack more the mental health myths as it correlates to hearing loss.
Change the Therapeutic Milieux
Gloria: With my last, large hearing drop I no longer could communicate effectively. My receptive communication was disrupted, 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.
Misconceptions
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.
Increase Mental Health Awareness
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.
A Bad Rap
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.
Change the Stigma
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.
Looking back…
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.
Not the ‘Typical’ 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 un-diagnosed? How many teenagers are labeled as antisocial? Defiant? Maybe even ADD for not paying attention. Are we checking their hearing?
Misdiagnosed?!
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.
Emotional Support with Hearing Loss
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.”
No Training for Hearing Loss
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, or Listen to Our Podcasat
Watch us with captions on our YouTube channel or find our podcast with Gloria on your favorite streaming platform.
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.