I have read about the five stages of grief — denial & isolation, anger, bargaining, depression and finally acceptance — and they remind me a lot of the stages of hearing loss. This makes sense, because for many, myself included, the loss of hearing is something to be mourned, to be missed, to be fought. We hide it, we hate it, we ignore it, we are sad about it, and eventually we accept it, or at least the lucky ones of us do. But for people with hearing loss, these are not the only steps.
With hearing loss, it is a process of not only grieving, but also of learning to live again in a new and different way. There is fear. There is reliance on other people like doctors and audiologists. There is technology to learn, new habits to create and accommodations to request. There is acceptance, but even with acceptance there is the constant battle of self-advocacy. It is exhausting, but it is worth it.
Here are my stages of hearing loss. What are yours?
1. Denial: Why is everyone mumbling? If only they turned down the background music, I could hear my dinner companions just fine. The audio for this TV program must be set too low. We’ve all been through this one.
2. Fear: What if it is true? How will my life change? Will others shun me? Can I function at my job? As a parent? As a spouse? Will I face discrimination? The stigma associated with hearing loss can make people afraid not only of the loss of their hearing, but also of social embarrassment and shame.
3. Anger: Why can’t people speak more clearly? Why is my spouse such a low talker? Keep your hands away from your face when you talk to me! This is not fair.
4. Sadness: I feel isolated from my friends and family. I don’t want to socialize anymore because I can’t hear what people are saying. Nobody works to include me in the conversation. I missed the punchline of the joke, again. I am unhappy.
5. Realization: I can do something about this. It is up to me to make this better. I need a roadmap to navigate the puzzle of hearing loss.
6. Action: Making that appointment for the first hearing test or hearing aid consultation sometimes takes a lot of courage, but it is the right thing to do. Try to involve your family in the process. You will need their support and assistance.
7. Frustration: I am treating my hearing loss with hearing aids/CIs and other devices, but I still have problems hearing. Why isn’t my hearing restored to normal? Unfortunately hearing aids don’t work like glasses.
8. Hard work: Keep trying. Adjust settings. Try some more. Hearing our best takes a lot of hard work. We need to keep trying new technologies, keep up on the latest assistive listening devices and reminding ourselves and others to follow communication best practices. But it is worth it.
9. Acceptance: My hearing is not perfect, but I function better with my hearing devices. I understand what I need to do to hear my best and I can ask for what I need from others. I am socializing and enjoying myself again.
10. Advocacy: What can I do to make life easier for other people with hearing loss? Getting involved with others who understand your situation is not only rewarding personally, it helps make the future brighter for the next generation.
Readers, did you go through the stages of hearing loss?
Follow Living With Hearing Loss on Facebook and Twitter!
HA! DID I go through stages of hearing loss? Shari, I am STILL going through just about all of the ones on your list. It seems that I am always in some state or stage relative to my hearing loss and or dealing with the devices I use to get along in my world.
Just this past week I had a hugely successful session with my audiologist – a virtual breakthrough session. As a result, I am hearing and understanding much better than before. I’m excited – right? Then we have this washing machine repair guy out yesterday and he performed a miracle on our machine (for a price). He talked and talked about what he was doing. Carol Ann is getting it all and I am getting about a third of what this man is saying. He starts off well then his speech degenerates into an indecipherable buzz as far as i am concerned. In about a minute I checked off almost all of your stages of hearing loss.
I’m still excited about the progress I have made but I have also learned an important lesson: It will never be good enough. It will get better. There will be other breakthrough sessions – and it will never be good enough.
Anyway, that’s my definition of acceptance for the moment.
Thanks Jerry! I think we all keep going back and through the stages overtime. So glad you had a breakthrough session with your audiologist! Stay focused on that. That is good news.
Shari.. Another great blog! Love this! I’m going to take it along for my presentation at the senior center this morning! Thank you!
Excellent! So glad you find it helpful!
One of the fears I have experienced is people coming up from behind me. I don’t hear them and then they walk by me and I jump. Sometimes I make them jump too. Also crossing the street or even walking in a parking lot. I have to be very careful. At first I had a few close calls but have learned to always look because you can’t hear.
Thanks for sharing your experiences.
My mother “jumps” from being startled, much more readily than I (both born with a hoh problem that gets gradually worse) . Maybe being more aware of your surroundings helps, but haven’t heard of any other solutions.
Interesting idea. Thanks for sharing your thoughts.
I agree with Jerry, that it’s easy to cycle back through some of these stages–in my experience, particularly anger, sadness, frustration and hard work. It’s extraordinarily frustrating to find yourself explaining to the same people for the umpteenth time that you can’t hear under x, y or z circumstance. It’s hard work to keep your ears clear of wax, your aids current and in repair, your auxiliary technology charged and available. I would add embarrassment to the list. I’m still furious when I think about how little health insurance helps me keep up. I know I should feel this way, but I can still feel shame when someone snaps at me or shows impatience and I have to confess that I couldn’t hear well enough. Then, of course, they probably feel some embarrassment. It’s never as good as you’d want.
That being said, I also cycle into hope. Technology keeps improving and I have help I never could have imagined 30 years ago when my genetic progressive loss first showed up. My older relatives would have given anything to have access to what I have, and I am now free from the fear that like some of them, I would outlive my hearing, thanks to the prospect of a CI when I need it. And by then, my ENT tells me, those implants will be amazing.
Sorry for leaving a late comment; today I’m cleaning out my inbox. I came across this and it really resonated with me. I find myself taking steps back and forward on this “timeline.” I slip back to Anger, yank myself back to 8-10. Because my audiogram is about 1/3 full and my degenerative loss is about 5-10 decibels a year, I find myself sitting uncomfortably on the fence between Deaf and Hard of Hearing. My signing is still about intermediate, so I don’t really fit into my local Deaf community, but I can’t function normally in the hearing world, even with HAs. I want to find peace with this part of my identity, but with the ongoing change of my loss, I don’t see that happening. Even when I lose all my hearing, I may get a CI and still not fit in anywhere.
Back and forth through the steps is very natural. Thanks for sharing your experiences.
Reblogged this on Go to Can't Remember Diddly dot com and commented:
I came across this and it really resonated with me. I find myself taking steps back and forward on this “timeline.” I slip back to Anger, yank myself back to 8-10. Because my audiogram is about 1/3 full and my degenerative loss is about 5-10 decibels a year, I find myself sitting uncomfortably on the fence between Deaf and Hard of Hearing. My signing is still about intermediate, so I don’t really fit into my local Deaf community, but I can’t function normally in the hearing world, even with HAs. I want to find peace with this part of my identity, but with the ongoing change of my loss, I don’t see that happening. Even when I lose all my hearing, I may get a CI and still not fit in anywhere.
This was a really great article about the experiences people can go through during hearing loss. My favorite part that you mentioned was the stages of realization and action when you decided to finally make the first appointment for hearing aids. A friend of mine has just been diagnosed with hearing loss and I wanted to help her as much as possible by seeing what she could possibly go through. Neither of us had any idea that it could be so emotional. Thanks for sharing your experience I will be sure to show my friend.
So glad you found it helpful. Good luck to you and your friend.