By Dr. JJ
12/14/2021
The Emotional Journey of Hearing Differences
Understanding the emotional journey of hearing differences has been a professional interest of mine from the beginning. Hearing differences are chronic conditions that require buy-in from the patient and their families, so that management of the hearing difference in the home can be effective. Sometimes, the emotional impact that comes because of the hearing difference can be a barrier in how parents and children manage their hearing needs when they aren’t with their audiologist. For children, this is a big deal, because if the family has chosen spoken language as the primary mode of communication, children need consistent access to sounds through technology.
In many cases, counseling is needed to help patients and their families work through these emotional journeys to optimize how they manage their hearing-related needs in the home. Counseling is part of the scope of practice for audiology. However, you may be hard-pressed to find an audiologist who feels comfortable counseling in an evidence-based way. Data have shown that, while many audiologists think counseling is a good thing, few engage in counseling because they feel they are stepping outside of their bounds. Yet, this isn’t true. And many patients may suffer more because this area of their clinical services is being neglected. Here at Little Heroes, counseling is our forte!
Earlier in the year, I wrote of the emotional journey parents experience when learning of their child’s hearing difference. Today, I would like to talk about the emotional journey experienced by the children themselves.
The Emotional Journey in Children
I am currently working with a ten-year-old girl whom I adore. For privacy reasons, we’ll call her Adrienne. She was born with single-sided deafness due to cytomegalovirus. She received her first cochlear implant at seven years old, and since that time her other, hearing ear has been experiencing a progressive hearing loss and she is getting fit with a hearing aid on that ear in the coming weeks. Adrienne came to me, because she is refusing to wear her cochlear implant processor and has been for almost three years. The result is that she experiences significant difficulty understanding speech, especially in noisy places. She was referred to me for central auditory processing; however, to me the issue is not about how her brain handles what she hears (although it may eventually come to that). Rather, the issue is that Adrienne is experiencing internal thoughts and feelings that are barriers preventing her from using her technology to better access sounds.
In other words, to me this is a case of needed counseling.
Adrienne has been seeing me for some counseling and aural rehabilitation for a few weeks now, and the reason why I wanted to share her story is because of something she said at her latest session, which really emphasized for me the reason why counseling is so important. Through strategic counseling methods, Adrienne has revealed that the number one reason she does not wear her cochlear implant processor is because she is worried about how her peers might think of her and what her peers might say about her.
This fear is real, but as I was exploring this fear with her at her last session, we did an activity that triggered an outburst of deeply charged expressions. I learned that, beyond being worried about what her peers think of her, she detests the feelings she gets from being singled out because of her deafness. For example, she hates her preferential seating accommodation at school, because her teachers frequently ask if she’s doing all right and she does not like the attention.
After explaining her frustrations with how she’s treated differently because of her hearing difference, and nearly in tears, Adrienne stated:
“Everyone talks to me as if I should be lucky that I have the cochlear implant. But I’m not lucky. I don’t feel lucky. I hate this virus.”
It was as if a dam burst when Adrienne expressed this feeling that was clearly deeply withheld. And with that expression, my instructions were clear: Adrienne needed validation. She needed someone to agree with her. So, as clear as I could, I looked Adrienne in the eyes and said,
“I am on your side. This sucks, and you’re right. You’re not lucky. It’s not luck that you got cytomegalovirus and lost your hearing. It’s not luck that you also have vision problems and have to wear these glasses. It’s not luck just because you live in a time when cochlear implants exist. You’re not lucky to have this hearing loss.”
It seems like such a negative thing for me to say, but the fervent nods of agreement Adrienne gave me as I said these things spoke volumes. Adrienne wanted to be heard. She didn’t want her feelings to be dismissed (unintentionally). She wanted someone, somewhere to know that she did not like what happened to her, and she was not grateful, no matter what anyone else told her to be.
Adrienne wore her cochlear implant for the sake of communication (e.g., not mapping) for the first time in years for 15 minutes while in session. I did nothing technical from an audiology standpoint.
Counseling Matters
The emotional journeys of hearing differences are highly varied. Regardless of the emotional reaction, self-management of hearing needs will not happen unless there is acceptance and commitment from the patient. This holds true even in pediatric populations. For so long, Adrienne was told that she needed to wear her cochlear implant for a wide variety of technical reasons. But these did not resonate with Adrienne, because all she is noticing is that her peers don’t get the unwanted attention she gets, and she wants the same.
However, it doesn’t all get resolved just by expressing these feelings. Now, we can continue to reshape the thinking. Yes, it sucks, and she hates it – but what does it do for her that she likes? What does she want for herself as she grows up? What can the processor do to help her? By acknowledging her feelings, we can now begin to focus on moving forward. We are no longer in the business of dismissing how she feels. We want Adrienne to feel empowered and make decisions based on her values and not on her fears of how things might be – and most certainly not on her negative, yet valid, feelings about her deafness.
I sincerely hope that all young adolescents who are struggling with their identity as a deaf or hard-of-hearing individual can openly discuss their thoughts and feelings in audiology appointments. So many resources are wasted with programming the amplification technology over and over, even when children are not consistently using their technology. Wouldn’t it be so amazing if audiologists everywhere spent a few moments talking about how patients feel and use counseling skills that can help reshape how patients manage their hearing-related needs at home? I think it would be.
Is your child struggling to use their technology because of emotional barriers? Feel free to call us and ask how we can help you! (801) 996-7510. We are here to support always.
Listening Therapy – What Is It and Who Needs It?
With Great Responsibility Comes Great Power
Managing Use of Hearing Technology in Children
There Is Help: Hopelessness is Unacceptable
Getting Straight Answers About Auditory Processing
The Locked Door
School Year Worries
Still Human, Just Different
The Night I Went Camping With A Bear
The Emotional Journey of Childhood Hearing Loss