Does your hearing loss ever scare you? Most of the time I accept my hearing loss, following communication best practices and self-advocacy tips to live my best life. I feel confident and capable. But sometimes I get afraid. Like when my hearing aids are on the fritz for a few days or I have a particularly challenging communication experience. Or when I have a close call crossing the street or trouble remembering something.
These are the times when I succumb to worry. What will my life be like as my hearing loss worsens? How will it impact my relationships? My health? My livelihood?
Here are the 6 things that scare me the most about my hearing loss. Please add your thoughts in the comments.
1. A Higher Risk of Dementia: Whenever a new study comes out linking hearing loss to dementia, I worry about the consequences for me. The latest study (July 2017) produced by the Lancet Commission on Dementia Prevention, Intervention and Care (LCDPIC) stated that hearing loss in mid-life could be responsible for 9.1% of the risk of developing dementia. Yikes! The good news is that the study characterized this as a modifiable risk, which means that treating hearing loss (using hearing aids, CIs or other assistive listening devices) can lower that risk.
2. Feeling isolated and lonely: Hearing loss makes communication more difficult and exhausting, which can often lead to self-imposed isolation. When I feel this tendency, I take a break, and then force myself to reengage. It takes work, but the rewards of intimacy and friendship are always worth the effort.
3. Passing it on to my kids: This one won’t apply to everyone, but for me, it is one of the primary reasons for my advocacy work. My hearing loss is genetic, starting in my mid-20s. I hope I have not passed it onto my children (they are too young to know for sure), but if I have, I want them to be as prepared as possible to thrive despite hearing loss and its challenges.
4. Becoming irrelevant: Communicating with someone with hearing loss takes extra time and planning. Why engage with the person with hearing loss when you can contact/hire/befriend someone else more easily? Every “Never mind” and “It’s not important” supports this fear. Speaking up against this treatment is our only choice.
5. Being unable to do things I enjoy: Hearing loss makes certain recreational activities harder. Luckily technology has made it possible to successfully attend the theater, listen to music, and watch movies, even with a hearing loss. Future advancements will only improve our access to these activities and more.
6. Ending up alone: Hearing loss is difficult for the person with the hearing loss, but it also takes a toll on family and friends. In my darkest times I worry that this burden will become too much and I will be left alone. Lucky for me, I have a supportive family and a network of hearing loss friends that I hope will be with me for quite some time.
Readers, what scares you most about your hearing loss?
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I think you just about covered it for me, Shari.
On a related note, has anyone following this blog had cochlear implants? If so, are you happy with them? Regrets?
We have many CI wearers who comment regularly. Most seem satisfied, but I will let them speak for themselves. Thanks for your comment.
I am at 9 months activated with my CI. If you have any questions feel free to email me. I would also recommend joining Advanced Bionics Hearing Journey online. It is a roller coaster journey but well worth it
I have cochlear implant in right ear. Yes it’s worth it. I didn’t think I was doing that good with it til I was without it for a week. Big difference. My only reccomendation is to be completely deaf in the ear you want implant in.
If that’s the case, then perhaps it’s not for me. I’m not completely deaf in either ear.
I would check with your ENT. I know folks who have CIs who did have some residual hearing, but it was not much.
Right. I’m currently working with my audiologist and ent.
For me too… I have tinnitus too. That has passed on to my kids. Hope the loss won’t
Hope so too. Thanks for sharing your thoughts.
How do you respond to “never mind”? My friend and I feel this is one of the worst things someone can say to us, like we’re not worth the effort.
I find if I repeat back to them the parts that I heard, then they can fill in the part that I heard wrong or missed. And because it often adds a bit of humor, since many times what I heard rhymes with what was actually said, we both get a laugh out of it and then they are more likely to be okay with filling in the blanks for me. My husband also has hearing loss, but won’t wear his hearing aids, and I find repeating part of a sentence is preferable to a whole sentence. So I’m guessing that’s part of it for other people too.
Thanks for sharing your suggestions.
Great question. Here is a post I wrote on this topic. Thanks for asking. https://livingwithhearingloss.com/2015/05/26/please-dont-say-never-mind/
I’m afraid of knowing how bad it is and where it is heading. I haven’t even been checked yet but I know it’s getting worse. My family doesn’t mention it but I know they can tell. I’m turning up the TV more and asking them to repeat themselves. I need to just break down and make an appointment but every time I start to, I back down.
Please make the appointment. It is always best to know the truth. Then you can take steps to treat it. Good luck to you!
I’m new here and love to here all these true concerns. I’ve had hearing aids for 2 years and am just now getting how hard this is! I’m feeling I bit angry and frustrated in my new reality! Unless my peeps face me,I cannot hear them. Feeling some isolation even tho my family supports me. I think I have to school them, thanks for your help:))))
So glad you found our community! Hearing loss can be a tough pill to swallow but with technology and good planning you can lead a wonderful life despite the challenges. Welcome!
Facing our own hearing loss is very difficult, no question. Please do get the help you need. Not getting what you need could make things worse and put you at a further disadvantage. If you need support, ask a friend to go with you to your initial audiology appointment. Please do not wait any longer and take control of your situation. Best of luck!
Go get some help and you won’t regret it. I wish I went and got help much earlier
I lost most of my hearing in a car accident last April. I had some hearing loss before but was functioning ok. Your comments reflect many of my tnoughts as I fight this maze of hearing aids, other devices etc. thank you.
It is a big adjustment, but with self-advocacy, a life with hearing loss can be a wonderful one. Thank you for your comment.
I’m afraid that I won’t hear emergency warnings that are broadcast, delivered by phone, when I have my hearing aids out at night. Reading about all of the elderly, many hearing-impaired folks, who lost their lives during the recent fires in Northern California makes me want to find ways to be sure of getting timely alerts to emergency situations.
Here is a post I wrote about being prepared in an emergency with hearing loss. I hope it helps. https://livingwithhearingloss.com/2016/09/27/how-to-prepare-for-an-emergency-when-you-have-hearing-loss/
I always find myself getting irritated to the comment that I’m too young to have hearing problems, or the slight off-handed jokes about my hearing loss. Most of the time I can just let it roll off my back, but other times you can get the feel of how the person is meaning it (especially some of the elderly folks).
I also have the fears of “how will this progress later into my 30s, 40s?” and “what would life be like should I lose it all one day?”
I get those comments too. Thanks for sharing your thoughts.
I have mild hearing loss. The worst for me is in crowded places. Having a conversation with someone is next to impossible. It’s embarrassing to the point where I try to avoid that situation all together. It is a scary to think it will get worse
It is scary but important to not give into the urge to retreat. Maybe visiting an audiologist might help you find some solutions. Thank you for your comment.
I have been thinking about going in to get checked out. Thanks for your advice!!
Truthfully, I experienced fear as I read some of the fears. But on a normal day, I’m busy going about my day thankful that I am experiencing hearing loss and that my hearing is not lost. I have deep spiritual and religious beliefs and recount this affirmation quite often to keep me present and in gratitude: “what is for me I shall hear, easily and effortlessly.”
I am so glad that works for you. Thanks for sharing your story.
I’m bimodal. HA and CI. Definitely a challenge. I’ve only had them for a couple of months. I’m working hard to hear! Went to a wedding this weekend. I was able to hear the ceremony but the noise at the reception wore me out. Hoping it all improves with time. Isolation is my biggest fear!
It will definitely get better with time and practice. Thanks for sharing your thoughts.
I wear a Baha (bone anchored hearing aid) on one side only. Makes for interesting hearing situations when I have to remove it for certain activities like current physical therapy. I’d forgotten about removing it then had to lie on my hearing side. Oops! Can’t hear the therapist. Head adjustment time. Then there’s night time when I sleep on my hearing side. Fortunately we now have a hearing alert dog in training and he’s doing a great job. My hubby has dementia and frequently gets up at night. Before our dog I wasn’t aware of his wanderings. Now every time hubby gets up our sweet pooch bounces up on my side of the bed to alert me. Annoying to be awakened but vital that I know what’s going on. Hearing loss means lots of adjustments to life’s routines but we can do it. There’s always a solution.
Absolutely. That dog sounds wonderful too! Thank you for sharing your experiences.
Like you, I have congenital hearing loss and started wearing aides in my 20’s. I was always embarrassed and did not wear them frequently at all. Even when wearing them I did not hear people when they were behind me. Lots of people thought I was conceited because i did not answer them. I am now 70 and my hearing has progressively worsened, but technology has improved so much, that I feel so much better adjusted to the outside world now. With Bluetooth and loops my life is so much improved. It got to the point that I shied away from phone conversations because of static or just not being able to hear the other person. I started to rely heavily on text and messaging. Now I have great hearing aids that connect directly to my iPhone (Widex Beyond) and once again I can enjoy talking on the phone. I look forward to more great strides with technology to get me through my “golden years” I really do not think dementia will be an issue if you stay connected to the outside world. I feel it is more likely when you become isolated and withdrawn from your friends and family.
I agree. Thank you for sharing this wonderful perspective.
Reblogged this on Beyond disAbility and commented:
This is amazingly clear! Thank you! I hope I didn’t “steal” your work when I published it on my site. I am still learning the fun thing that is wordpress!
As long as it links back it is OK. Thanks for sharing it.
BECOMING IRRELEVANT: All these things scare me Shari but this one is most scary.
Marginalized! Sidelined! Left out! Passed over! Call it what you will, it doesn’t feel very good. However, I often wonder if I am somehow complicit in the process. I confess to not wanting to place an additional burden on others. I “assume” that others would rather not have to adjust to my disability. And I fear the worst is yet to come. Furthermore, irrelevancy can be active or passive. How much of my sense of relevancy can be traced to the world around me and how much to me?
I am also quite conscious of being old. Not much can be done about that. The superannuation that accompanies age sort of confuses things. Do I feel irrelevant because I am deaf or because I am in my middle 80s? It’s kind of a double whammy. At times I have to laugh at myself. How much involvement in the “fast lane” do I really want? I like being old. I don’t like being deaf. I will continue my efforts to hear and understand. It feels good to be able to do something about that. And I will continue to enjoy the benefits of being an old man. Somewhere in all that I must maintain the connection to the real world around me. That’s the job.
I’m not sure any of this means anything to someone else but this stuff is always on my mind.
I think it is on all of our minds. Thanks for sharing your thoughts on the subject. Always helpful to the group.
Great topic , and while we all have different fears, loss of any major sense is scary! With hearing loss, it puts us in situations we don’t want to experience , loneliness, not being able to hear music or enjoy a live performance , of being isolated from a group conversation , and missing out on the opportunities to meet new people randomly because you can’t always start a conversations with the “fear” of not hearing! Hearing loss really changes who you are !
But my greatest fear at age 55 and having a gradual loss since age 2 is not only the fear of going completely deaf , but also of losing my vision as well .
Very scary. All we can do is continue to self advocate and stay on top of our conditions. Thank you for sharing your thoughts on this.
Hi Shari
For me personally I’d add not knowing when something or someone is coming up behind me. Not being able to locate where a sound is coming from. Feeling very isolated in background noise, as even with hearing aids I struggle to understand conversation in that environment.
The future or not knowing where my hearing loss will end up at doesn’t phase me because as I’ve mentioned before my late father and grandfather were both profoundly deaf as old men as is my late father’s only surviving brother.
So I kind of know that, if God let’s me live long enough, then I too will become profoundly deaf as I age.
Ian
Thank you for sharing your thoughts with the community.
All of your 6 concerns are real. Something else that truly scares me is the feeling of vulnerability in some situations. I am talking about situations where I am alone, perhaps walking somewhere, riding a bike, etc. This is reinforced by the tragedy in NYC that happened yesterday; on Halloween. Even with a cochlear implant, and a hearing aid, which work well for me in most situations, I still have a problem identifying sounds behind me. Often I hear a sound, but cannot tell immediately where it’s coming from. When I took night classes at a university, I had to park a good distance from the building and walk. Walking wasn’t a problem, hearing awareness was. We are being advised to be aware of our surroundings due to many horrible happenings in recent years. Does anyone else feel vulnerable in this respect? Has anyone ever applied for a disabled parking permit because of their hearing loss? Just curious. We have been talking a lot about emergency preparedness recently. How do we approach the kind of vulnerability that arises when we don’t hear what’s behind us?
You are right. That is a very scary feeling. The only way I have found to make up for this is to use my eyes — checking my surroundings visually often when I am out and about. It is more challenging when it is dark however. Thanks for sharing your comment.
Its a sad and scary world we live in and with or without hearing, we all feel vulnerable and unsafe anywhere we go. I think with hearing loss, we almost develop like an 8th sense that helps us survive and manage to just get through somehow . Our vision and mental also kicks into high gear at times of need when our hearing is just not functioning well enough .
That is a good way to describe how our vision and concentration really help us out. Thanks for sharing your thoughts.
A major concern of mine is that if I ever have to go into hospital and am unable to deal with my hearing aids hospital staff may remove them. This happened to my mother. At the time I was unable to replace them and I knew that should she regain consciousness after her stroke she would be unable to hear. It is unlikely my husband could deal with mine as he has problems with his fingers.
That is a tough challenge. Be sure to leave them with a trusted friend at the hospital so they do not get misplaced. Thanks for raising this issue.
A major concern of mine is of possibly being in a situation where I cannot manage my hearing aids myself such as a hospital or care home. My mother’s hearing aid was removed after she suffered a stroke in hospital some years ago. I did not know how to replace it at the time and neither did anyone else. I was so annoyed as I know that the last sense to go is the hearing and she was denied that at the end.
I am sorry to learn about this. Definitely a shame. Thank you for sharing your story.
One of my biggest concerns is whether I can effectively do my job in the long-term. I work in a primary school and I struggle to hear. I worry about what else I might do if I have to give up working in education – it’s pretty much the only job I have any experience or knowledge of. My hearing loss is now moderate to severe.
Are there any creative accommodations that can be made in the classroom? Thank you for sharing your thoughts.