In her highly acclaimed book On Death and Dying, Dr. Elisabeth Kübler Ross, a Swiss-American psychiatrist described the stages of grief one can expect to experience when losing a loved one. The beauty of the book is that it is relatable and understandable in layman’s terms rather than presenting peer-reviewed scientific evidence. While each has it’s value, many have benefited by this book which paints a picture of the human side of loss vs. the clinician’s collection of random samplings of the population.

The five stages originally noted in her book are denial and isolation, anger, bargaining, depression and acceptance. Some sources note that shock or disbelief and hope were added on later. Elisabeth Kübler-Ross noted that the stages were never intended to be in any consecutive order, and that any stage can be repeated or skipped at any time. Like grief we feel when we lose someone, these feelings can come and go. Sound familiar and relatable to hearing loss?  I think so.

Denial is common among those who begin to lose their hearing. According to a New York Times article by Susan Seliger, Why Won’t They Get Hearing Aids?, Dr. Eric Hagberg, an audiologist in Youngstown, OH and then president of the Academy of Doctors of Audiology stated that the average person waits 7 to 10 years before coming in. The article also quotes that according to Dr. Frank Lin, assistant professor of otolaryngology and epidemiology at John Hopkins University only 14% of the 26.7 million people over 50 with hearing impairment use a hearing aid.

Isolation, as we know comes naturally with hearing loss. It is the easy way out. Dr. Frank Lin has also been cited for his work on hearing loss and dementia. According to his studies, persons with hearing loss seem to have a higher rate of dementia. This makes sense because isolation causes depression, and depression is often noted as a possible contributor to dementia.

Anger– Is it healthy? Counterproductive? Is it necessary to come to terms with any loss? How could anyone not become angry by the frustrations of hearing loss? But what level of anger is healthy?

Bargaining – There is no bargaining as far as I can see. It is what it is. Perhaps the only positive here is if someone agrees to get help and wear a hearing instrument their quality of life will improve.

Depression– Depression and isolation sometimes go hand in hand. In a current video I did for the Cochlear Americas, www.cochlear.com I stated that hearing loss is feeling like you are the only one in the room, even though there are others who are speaking that you cannot hear. It’s like going from a vibrant world of color to a world that is black and white with no colorful hues.

Acceptance– On a personal note, I have been involved with the Hearing Loss Association of America www.hearingloss.org and other organizations for over 25 years. As an advocate, it has helped me feel there are solutions out there for all of us. But I must admit, it was difficult for me when I finally crossed the threshold to total deafness. I already had one cochlear implant since 2005. I needed a second implant in 2015, but I was resistant to admitting that I am no longer a woman with a mild, moderate, severe or profound hearing loss, —I am a deaf woman! In denying this status, I was back to step one, denial. In a conversation with someone who had already been implanted bilaterally, she gave me a little tough love and told me to accept myself as a deaf woman. At first I felt she overstepped her place. But months later after receiving my second implant, I thanked her. Her response was “Welcome.” That is, welcome to accepting myself for who I am. Not being in denial that I needed a little more help, and yes deaf when not wearing my implants.

Only in the past decade or two has society acknowledged that there are unacknowledged forms of grief. Some examples might include the following:

The grief one feels when a former partner dies, even though they divorced years ago
Respecting the right of a gay partner to have a religious service
Honoring the death of someone who has died from HIV/AIDs
The grief of a miscarriage
The death of a child at birth
Experiencing infertility
Emotions felt after an abortion
The loss of a beloved pet
Suicide

When I was in graduate school, I had the honor of taking a couple of classes with the esteemed Dr. Kenneth J. Doka (www.DrKenDoka.com). Dr. Doka is a professor at The College of New Rochelle and Senior Consultant at the Hospice Foundation of America https://hospicefoundation.org, a prolific author and a keynote speaker throughout the world.   In class, Dr. Doka spoke about disenfranchised grief, a topic which he has lectured on, written journal articles and the topic of at least one of his books, Disenfranchised grief: Recognizing hidden sorrow.  According to www.cruse.org.uk, some of the statements Dr. Doka has made on this topic are as follows:

Worden’s formulation – change=Loss=Grief

A loss that cannot be socially sanctioned

In an interview on www.psychotherapy.net, Dr. Doka explains, “Disenfranchised grief refers to losses that people have that aren’t always acknowledged or validated or recognized by others. You can’t publicly mourn those, receive social support or openly acknowledge these losses…”

Disenfranchised grief seems relevant to the experience of those who suffer from a hearing loss that progresses over time. After all, it is the loss of one of our senses. It is the loss of life as we once knew it. The ability to keep up with conversation and chime in at family gatherings and dinner out with friends. The ability to have a telephone conversation without the stress of missing big chunks. To experience the rudeness sometimes present in our daily lives by those who don’t have the patience to repeat or rephrase. Finally, , –to acknowledge that we have crossed that threshold to total deafness and be ready to accept ourselves and our new life in this mode.

There are some who may be dismissive of the profound loss this is. Some will even minimize the feelings of loss by telling the person with hearing loss something really stupid like at least you’re not blind. Comments like that do not take away what is felt in someone’s heart and the pain they have endured, but it’s not uncommon to get this response.

In the final analysis, it is this self acceptance and willingness to grow in our new identity that allows us to live a full life rather than to be “stuck” in any of the stages of grief.  Also, we need to educate health professionals to understand that hearing loss is a loss that can affect our emotional, psychological, social and physical well being.  Wellness involves anything that affects our homeostasis. Part of this wellness is the acceptance of the need for hearing aids, cochlear implants, assistive devices and accessories and any other device or assistance that will enable us to improve our quality of life.

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