We must break the stigma that surrounds hearing loss. It is a matter of life and mind — your mind. Research shows that people with a mild hearing loss are twice as likely to develop dementia as those with normal hearing, and this risk increases with the severity of the hearing loss. Over a six-year study at Johns Hopkins, the cognitive abilities of older adults with hearing loss declined 30%-40% faster than in older adults whose hearing was normal and developed a significant impairment in their cognitive abilities 3.2 years sooner than those with typical hearing. Hearing loss is also associated with higher incidence of heart disease, diabetes, and depression.
WHO has hearing loss?
Hearing loss is not an isolated incident. Fifty million Americans have hearing loss today. This includes 1 in 5 teenagers, and 60% of our returning veterans from foreign wars. In fact, more people have hearing loss, than suffer from diabetes, Alzheimer’s, autism and osteoporosis combined! Nevertheless, it does not seem to be a priority within the national healthcare dialogue. Maybe it is because hearing loss does not kill you. It is true that it is not fatal, but it can take away the quality of your life, through isolation, depression and the early onset of dementia, along with other health problems.
I am one of the many people in this country with hearing loss. My hearing loss is genetic and began in my mid 20s. It has gotten progressively worse since then. It took me 10 years to come out of my hearing loss closet, mostly because of the stigma that I felt was associated with hearing loss. My father hid his hearing loss due to stigma, and my mother was not supportive of my getting and wearing hearing aids for the same reason. In fact, it takes most people an average of seven years to get hearing aids once they have need of them. The delay is partly due to denial, but a big part of it is the stigma. This has to change.
WHAT is the stigma of hearing loss?
It is hard to figure out what the stigma of hearing loss is exactly. Are people with hearing loss old? Stupid? Ugly? Uncool? Not worth the extra time it takes to communicate with them? All of the above? While the exact nature of the stigma is not clear, many of us with hearing loss feel it, nonetheless. Of course none of the stigmas are true. People with hearing loss range in age from newborns to the elderly, and with the increase in noise pollution so prevalent today, many new cases of hearing loss are in teenagers.
I find the hearing loss stigma odd, since there is no detrimental view of wearing glasses, or using a wheelchair or other assistive devices. Perhaps it is because hearing loss is invisible, so that its presence is not obvious. This makes it easier for others to assume the person with hearing loss is stupid or rude when they respond inappropriately to a question, while the reality is that the person probably just didn’t hear what was said.
WHY is it important to break the stigma of hearing loss?
Due to the stigma, many people who could benefit from treating their hearing loss do not. The NIDCD states that among adults aged 70 and older with hearing loss who could benefit from hearing aids, fewer than one in three (30 percent) has ever used them. Even fewer adults aged 20 to 69 (approximately 16 percent) who could benefit from wearing hearing aids have ever used them. Given the serious health issues associated with untreated hearing loss, this needs to change.
Today’s laws contribute to the stigma of hearing loss. For example, glasses are covered by most health insurance providers in the United States, but hearing aids are not. This prevents many people from seeking treatment. Until hearing loss is recognized as a serious health issue and appropriate accommodations for those with hearing loss are made, the stigma will not fade and people with hearing loss will not seek the help that they need.
HOW can you help break the stigma of hearing loss?
- Get your hearing tested as part of your annual medical screening and encourage your friends and family to do the same.
- If you have hearing loss, treat it. Visit an audiologist to learn about hearing aids today or talk to your general practitioner.
- If you have hearing aids, wear them. It takes time to perfect the settings, but they do help.
- Speak up about your hearing loss. Being vocal about your own loss will gradually lower the stigma for others.
- Show that hearing is something to be valued. Protect your hearing and help others protect their hearing by offering earplugs or tuning down the volume.
- Appeal to your elected officials to make hearing loss an important part of the national health agenda.
Readers, do you feel the stigma?
Excerpted from my article in the November/December 2015 issue of Hearing Loss Magazine.
Dear living with hearing loss:
I am aware of much of the research still ongoing re: dementia / hearing loss. Would you mind giving the article that says “twice as likely” as I would be interested to read it.
Thank you kindly,
RPT
Here you go. http://www.hopkinsmedicine.org/news/media/releases/hearing_loss_and_dementia_linked_in_study
Wow! That is downright scary! I am taking classes how to read lips and my therapist showed me your blog today. I think I had better keep as active and as mentally stimulated as possible to avoid this outcome!
Thank you for reading!
Not using hearing aids in many cases has nothing to do with stigma but rather lack of money. I waited far too long because there was simply no way to pay for them. I still use only one when I really need two because I have a limited income and not enough $$ for the second one. If anything happens to this one I’ll be back to doing without
The cost is a serious issue, I agree.
This is not right. I completely understand where you are coming from. There should be help for those out there who can’t afford aids.
I agree! Thank you for reading!
Having just replaced my 6 year old BAHA with a new BAHA 5 system, I feel like I should totally bling the thing out so everyone will notice it! The darn thing is worth twice what my wedding ring is! LOL! Plus i have a nice Phonak Audéo V on the other side. Yeah, I want bling on that one too. I am single sided deaf from having an acoustic neuroma removed nearly 7 years ago, when I was 46 years old & my kids were in kindergarten & preschool. They are thrilled mama can now hear on both sides again. They have no problem with a mostly deaf mother.
I was not nearly so kind. My own mother needed double hearing aids from the time she was 30. I was 2. I used to make fun of her. I am ashamed of how I acted. I proudly point out my new technology attached to my head when I say, “I’m sorry, I missed that.” for the 4th time. People are generally kind about it & rather intrigued by the snap on hearing device! That’s why I’ll be getting some ear cuffs from thehearclip.com soon. 😀
Good for you! Bling away!
I have the same problem -single hearing but I cannot wear an aid in the one where the neuroma was removed . What do u wear in that ear
I have the bone attached hearing aid on the deaf side. Three months after AN surgery, I had the BAHA implant put into my skull. The cochlear BAHA 5 attaches to that, nothing in that ear, only snapped onto my head. The Phonak is an in-the-canal type, so rather invisible. I’ll be getting some lightweight charms to wear on the Phonak.
I just remembered, the Phonak Cros II is worn on the deaf ear & transfers sound to the hearing ear. I never looked into that since I already have the implant in my head. Check that one out. It might help.
Wearing glasses usually corrects vision to a near perfect status. Wearing hearing aids does not restore hearing to a normal level. One time I was following a medical tech into the procedure room and she was talking to me and I couldn’t hear her. So I told her I was hard of hearing. She turned and said ” have you considered hearing aids?” I told her I was wearing two of them and she said “don’t they work?” Yep. That was a medical professional.
I just got off the phone with my credit union trying to figure out why my debit card is not working. It was a very, very frustrating call for me. I told the person on the other end ( who had a foreign accent) that I was hard of hearing. He was speaking very slowly and clearly, yet I was still having problems understanding what he was saying. Yes, I have a captioned phone, but the captions run very far behind and are often incorrect, so I don’t find it helpful. I have a telecoil and tried using that for this conversation and it did not help either.
These kinds of situations are very frustrating for me and I can’t help but feeling discouraged that I must deal with this hearing loss. I am vocal about my hearing loss, but knowing that my hearing aids don’t correct my situation may be a turnoff to others who are losing their hearing. Then talk about the cost….you can spend $5000 for a pair of hearing aids and still not hear???
Yes, there are a lot of frustrations with hearing loss. I guess all we can do is power on and self-advocate. Also HLAA and other organizations are working to change the laws which would make hearing aids more affordable.
I understand your feelings. I still have trouble when I can’t see the person’s face & lips. I routinely mis-hear, even with my hearing aids on. I agree with the blog saying people assume you are stupid or the aids din’t work if you need to keep asking others to repeat themselves. Phones arefrustrating. I try to do as much as I can in person, on video chat or e-mail/text. I have stopped feeling stupid or embarrassed when I ask the other person to repeat again& again. I will explain my hearing issue and ask them to please speak very clearly or ask if there is someone else I can speak with. “I’m sorry. I know you are trying your best, but I just cannot understand what you are saying. Is there someone else there who I can talk to? Maybe that would help me and we won’t be so frustrated here. Thanks.”
I find it outrageous that my BAHA is well covered by insurance as ‘durable medical goods’, meaning I can get as many as I need over a lifetime yet hearing aids are covered just a bit & are once in a lifetime! I have a $4600 durable medical item that we paid $1200 for out of pocket and a $2600 hearing aid that we paid $1300 for out of pocket. I am more afraid of the hearing aid breaking than the BAHA since that’s snapped onto my head. My glasses were only $48 progressives fron Zennioptical.com. Glasses are now a fashion statement, let’s try to have hearing be just as important.
Suz – You nailed it! Your experience is precisely what I go through any time I “need” to take care of anything on the telephone. When I am lucky enough to get someone who actually can pronounce words clearly (a skill that is not taught in schools anymore) I always thank them for speaking clearly. I agree that accents are a real problem and yet I don’t want to stigmatize persons with an accent any more than I want to be stigmatized for hearing loss. I get so tired of the frustration and anger that I experience while at the same time knowing that, in itself, is a trap I – we – must not fall into.
I wish people wouldn’t treat us like we are from outer space. I didn’t realize how closely I watched the body language of people we interact with….if they get uncomfortable, I bail out as fast as I can and do not invest any more than I have to with them. It is like cutting off your nose to spite your face. I have $4000. hearing aids but it is still a struggle. Also, I have been in debt for hearing aids off an on since I was about 20 and I am tired of being hoodwinked into ” these are the best!!!, they will really help you.” Please! It is insulting.
What I am grateful for is a career that I have had since 1981 and the love and support of my parents.
Thank you for sharing your experiences.
I have been deaf since age 5 heading into my 60th year of life this month. I worn hearing aids until I had a cochlear implant in 1985 in right ear. Had to have it replaced to FDA rules in 1996. Had my left ear implanted in 2009. Not perfect, but better than nothing. Everyone’s experiences is different depending on how severe it is and how old you are. I know most insurances cover CI but not hearing aids. Medicare does. cover CI’s. Its really a shame of people’s ignorance towards those with hearing loss, but it is a shame for those who have hearing loss and not to speak up. The HLAA is a great group to meet people who have struggled and still are. We need more people like you to spread the word and encourage others to come out of the closet and stop trying to hide and pretend. It does more harm than good. I know from experience. There is a lot of technology out there to help but due to having a limited income it isn’t affordable.
Thank you for sharing your thoughts. We really need to get the insurance problem solved — it would change things for the better for so many people.
When the stats are used to introduce this article (vulnerabilities to diseases and other illness), no wonder the stigma persists. We always wonder why those correlations (not causes) are with us – and they are due to, in our view, the lack of resources we need, as you say. And we so much agree with the fact that hearing loss is a major public health issue.
This article is a good summary, thank you. We too have published a less -readable article about this stigma and ways we suggest to reduce it, yet even after years that pass during which many of us try to do this in various good ways, this week I was feeling that it will persist until others understand much more about what hearing loss actually IS, and for us, what Captioning means (the latter my favorite language). Hearing loss is so variable. People don’t take it seriously. It’s not visible (as is sign language and deafness). Most of us speak well. We have a shared uphill journey, so many millions of us. (The heavy read, feedback welcome – go to https://drive.google.com/file/d/0B_vnTaZ_7cjsUmxneHRTY3NmRDQ/view?usp=sharing). Best to all, Lauren, CCACaptioning dot org
Thank you for sharing your piece.
We have a hereditary loss in our family. I had a lawyer tell me to not get hearing aids if I could get by without them. I did anyway, an now a volunteer for Cochlear. I would recommend everyone to get vocal to change laws on hearing aid coverage & to keep checking with your Audiologist for cochlear eligibility! We need to stand up & make sure the hearing can hear us loud & clear!
Absolutely! Thank you for your comment!
I had no idea hearing aids are not covered by insurance. That’s just ridiculous! Thank you for writing this article and sharing your thoughts and experiences, Shari. I hope it will start the movement that’s needed to break the stigma. When you compared it to wearing glasses or being in wheel chairs, it made it more clear how much of this is really socially constructed. I’ll be sharing this today and hope it will get the attention it deserves. Again, THANK YOU.
Thank you Joy!
The whole idea that I should feel any stigma in wearing hearing aids makes no sense to me.
I’ve worn glasses since I was 10 years old, that at 47 my ears have decided to join the fun is annoying, but it’s not embarrassing.
I don’t feel any stigma, I have purple (BTE open fit) hearing aids. I want people to notice them. I do social and voluntary things with lots of older people, I’m totally happy to discuss my hearing loss and perhaps encourage others to seek help.
However, people insist on telling me how “discreet” they are. Why, oh why is “discreet” the first word that comes into people’s mind when discussing hearing loss.
I live in the UK my cute and reasonably functional Oticons came completely free from our lovely NHS. People here don’t need to hide their hearing loss because they can’t afford hearing aids and yet still the reluctance to seek help remains.
Education around hearing loss is totally lacking, everyone assumes all hearing aids either cost ££££££ or are old analogue beige NHS bricks.
Everything in the press is negative, being about cuts to NHS audiology (cuts that have mostly not actually happened) and every Sunday supplement is full of Hidden Hearing adverts.
The only positive I’ve ever heard was one national radio show who’s producer came on air and sang the praises of his NHS hearing aids as part of a really good piece.
We need this positive message to spread everywhere.
Good points. Thanks for sharing your perspective.