SayWhatClub

Disclosing Your Hearing Loss: Why You Should Tell People You Can’t Hear

One of the more frustrating aspects of hearing loss is the constant need to explain it.  Frustrating it may be, but disclosing your hearings loss is vital to maintaining healthy relationships with the people around you.

Before I begin, I’m going to confess it took me a long time to get to the point that disclosure came naturally.  I didn’t know what to say.  I was afraid of ridicule or rejection.  Even though I did nothing to cause my hearing loss, I felt shame.  Eventually I realized that not disclosing my hearing loss caused more embarrassment than admitting it, and so I began telling people.

If you are late-deafened like me, and your speech has not been affected by hearing loss, most people aren’t aware of your hearing challenges.  Even if they can see your hearing devices, they may view them the same way they view eye glasses.  Here is a list of things deaf people do– that YOU might be doing too–  and why we need to tell others we can’t hear.

WHY YOU SHOULD TELL PEOPLE

 

we behave differently.

Many of us compensate well enough to mask our hearing loss, but not quite well enough to seem “normal.”  Most people don’t understand why you behave the way you do.  Hearing loss is the last thing on their minds.  Many of these situations are examples from my own life.

Attractive Lips

we lip read. 

Why you should tell them:  When we lip read, we stare intently at other people’s lips and eyes, or stand a little too close to get a good look at their tongues. Your body language may be misinterpreted as flirtatious, and it may be confusing people.  If the other person isn’t attracted to you, your romantic overtures could seem creepy.  On the other hand, if they respond in kind, it can be embarrassing for both of you.  By being proactive in disclosing your hearing loss and need to lip read, you can avoid those awkward times when lipreading is mistaken for sexual attraction.

We appear to ignore people. 

Why you should tell them: They have no clue why you sometimes give them the cold shoulder, and it makes you seem moody.  If your hearing aid or cochlear implant has a noise cancelling program that minimizes noise behind you, while maximizing sound in front of you, it is possible that your inconsistency in hearing may lead them to believe you’re ignoring them.  They don’t understand why you answer when they talk to your back sometimes and not other times. Also, no one remembers you hear better on your left or right side.  All they know is that you sometimes ignore them.  By disclosing your hearing loss, they may not take it personally.

We don’t laugh at jokes.

Many people tend to drop their voices at the punch line.  Puns can be exceptionally confusing to people with hearing loss and to lip readers.

Why you should tell them:  You seem to have no sense of humor, or worse, you seem slow on the uptake.  

dead cactus
.©2010 Andres R. Alonso / WUSTL.

We laugh at the wrong times.  

Someone says their cat just died.  You hear (or lip read) their cactus died.  You laugh and say, “I KNEW that would happen.”

Why you should tell them: You appear to be the most insensitive person they ever met!  It is much easier to explain that you misheard if they already know you have hearing loss.

cat

We use sarcasm accidentally.

Say someone doesn’t thank you after you’ve performed a favor of some kind.  You hear them mumble something as they’re walking away, and you assume they thanked you because that would be the normal thing to say.  YOU say, “You’re welcome.”  But it turns out, they didn’t thank-you; they said something else.  Now you’ve made them feel impolite for not thanking you, so they turn around, apologize and thank you.

Why you should tell them: You’ve implied they were rude. You seem petty and sarcastic.  However, if you’ve already disclosed your hearing loss previously, you can explain you behavior as a simple misunderstanding, because you didn’t hear.

We avoid the telephone.

Luckily many people like to text, but some still love to talk on the phone.

Why you should tell them: They think you’re avoiding them when you never pick up, especially if you gave them the cold shoulder recently, or didn’t laugh at their joke.  When disclosing your hearing loss, you can let them know that you prefer texts or emails.

We answer the wrong questions.

Coke

(A mostly true conversation.)

Him: “Have you seen my coat?” 

Me: “Last I saw, it was in the closet.”

Him: “WHAT!?! Why would my COKE be in the closet?”

Me: “I saw you put it there yesterday.”

Him: “What are you talking about?  I just opened it.”

Me: “And you didn’t see it hanging in there next to mine?”

Him: “WHAT?!?”

Me: “It’s right next to my BLUE one.”

Him: “My coke ?!?!?!”

blue coat

Why you should tell them:  They’re wondering if you’re crazy.  It’s much easier to explain you thought he said, “coat,” not “Coke” if you’ve previously disclosed your hearing loss.

We accidentally repeat a point someone else just made in a meeting, OR we ask the same question someone else just asked.

Does this ever happen to you? You ask a question and the response makes it clear that the question you asked was already asked and answered by someone else?   “Thank you, Kim, as I just explained to Michael moments ago, . . . “   Embarrassing, right?

Why you should tell them:  You seem inattentive or possibly daft.  By disclosing your hearing loss, the assumption will be that you didn’t hear, not that you weren’t paying attention.

I don’t know about you, but I would rather people know that I can’t hear than having them think I am bad-tempered, insensitive or daft.

As hard as it seems at first, disclosing your hearing loss will make your life easier, because after you tell people, they will cut you some slack if you need a repeat.  You’ll be off the hook when you avoid the phone.  No one will get upset when you don’t say hello.  They will understand you misheard if you laugh about their cat dying.  They will know to exercise a bit of tolerance where you’re concerned.

Have any of these things ever happened to you?  How did you deal with it?

To read more about the benefits of disclosing your hearing loss, go to Michele Linder’s post, Yin Meets Yang

 

 

 

 

Socializing With Hearing Loss

Staying Active With a Hearing Loss

Socializing with hearing loss is challenging.  Some friends have invited you to dinner. Your heart and spirit are tempted but pessimistic thoughts kick in. Your mind calculates the whole scene before it ever happens. The environment will be noisy and the total concentration is takes to hear will only result in words here and there, especially with so-and-so who never speaks up. Everyone will face different directions as they talk so there’s no hints from lip reading and of course the hearing aids pick up everything but the conversation. It’s easy to see yourself giving up, leaning back to watch it all play out before your eyes not understanding a thing and not feeling a part of it. People will laugh and you’ll be forced to smile without understanding. You will feel more alone at that table with friends than you would at home… and there will be a headache at the end of it from all the effort. All this flashes through the mind in a matter of seconds so you hear yourself saying, “No thanks, I’ll pass.” There’s a few more invitations, a few more excuses and friendships begin to fade. Instead, you sit at home in relative silence and ease, watching TV or movies with captions. Or settle in with a good book.

We, the hard of hearing, are afraid of being a burden on others by asking for repeats or making requests to make socializing easier on us. Maybe we heard a time or two, “It’s nothing, I’ll tell you later” and later never comes so we stopped asking. All of us have heard one too many times the ever irksome, “Never mind, it wasn’t important,” making us feel diminished so we stop asking for repeats. Sometimes we think we heard one thing and reply only to have all eyes swivel our way with a questioning look. Uh-oh, another off the wall answer that makes us want to excuse our self and hide in the broom closet with a handful of cookies. All it takes is a few times and for some reason we begin our withdrawal. We isolate ourselves and we let it happen.

Be upfront about your hearing loss and other steps you can take

It doesn’t help that hearing people think our hearing aids solve the whole problem. Our hearing is like a scratched up camera lens, no matter how much we zoom in, the scratches are still there. The first step in becoming social again is being upfront about our hearing loss. It is our responsibility to be knowledgeable about it and how it works (or doesn’t work), to learn about the technology available and find new coping strategies. It’s our responsibility to educate our friends because most of them are naïve.

Be Specific in describing your hearing loss

Most of us simply say, “I’m hard of hearing,” or “I don’t hear well,” so people think talking louder will solve it. That’s when I shake my head and tell them to hold up, volume doesn’t necessarily help. Here’s somethings I tell them to help them understand:

  • I hear vowels better than consonants (sensorineural hearing loss) so every sentence is like The Wheel of Fortune for me, piecing words together. My brain goes at light speed trying to keep up or let go hoping for other clues as I puzzle it all out.
  • My hearing aids are comparable to a cell phone. The sound on phones are improved these days but you know how the wind sounds thru a cell phone? My hearing aids are like that. How about background noise on cell phones such as traffic and restaurants; it harder to hear the caller, right? That’s about how my hearing aids work too.

After describing my hearing loss, others have said something like, “I had no idea!” Communication worked a little better from there so find a way to describe how your hearing loss works or feel free to borrow from above. The hardest part is being upfront about it all and advocating for ourselves. It’s scary at first but once over the hurdle, it gets lots easier. Most people are understanding once they know and want to help us, we need to give them the chance.

Restaurants

Now I’ll take the bad restaurant scene above and see if I can make it a better experience. Restaurants are a world unto themselves. All the tables are filled and serving people dart back and forth like a line of ants. The silverware clatter, dishes clash (which is what hearing aids pick up the most of) and music playing over the loud speakers. All private conversations join to resemble a low rumble because each person is trying to be heard above the roar. The ceiling is high and the noise is bouncing all over the place. How can we cope?

Ways to cope

  1. Ask to be seated in booth or for the quietest setting if possible. Also pay attention to lighting for lip reading cues.
  2. If the music is over powering, ask the waitress if someone could turn it down. It’s probably bothering the hearing people too.
  3. Don’t be afraid to claim the best possible place for your hearing; putting people in your better ear and making sure they are in the light. I’m not shy about asking someone to switch places with me if needed.
  4. Ask a friend to help you with the topic. Let them know you don’t expect them to repeat everything but the topic helps you keep up.
  5. Or ask your friends to go at a different time, when it’s quieter such as 4:00 before the crowd comes in.
  6. Take an FM system. I dined with people who had a severe hearing loss who brought their FM system or PockeTalker with them and weren’t afraid to use it. They held the microphone out to each speaker so they could participate in the conversation as well. We should all be so brave.
  7. Ask your audiologist for a setting on your digital hearing aids for these circumstances. For instance, I have a program right next to my regular setting that takes noise level down a few notches to bearable. I also asked the audiologist to turn off the back mics to focus them forward, cutting out all noise behind me.
  8. Don’t be afraid to stop all conversation by waving your hands around with a smile saying, “Wait, wait, wait! I gotta hear this, start again.”
  9. Arrange for a visual cue for so-and-so who constantly forgets to face you or talk louder. Take her/him aside and explain that you really want to hear what they have to say. Keep your smile and be gentle with the reminder.

How to handle a party

Then there’s going to a party where loud music is expected. Once again, everyone is talking over the music creating a dull roar. If it’s outside (a barbecue party) it’s a little easier to handle. Inside parties, such as a Christmas party will be harder to hear.  Banquets can be very hard. Talking to someone in these circumstances are challenging but it can be done and keeping a sense of humor intact helps. Use some of the above and.

Steps you can take

  1. Be upfront about your hearing loss with whoever you meet. “I’m sorry, I don’t hear well and I use lip reading for clues. Don’t worry, nothing is in your teeth.” I’ve also been known to pull off my red hearing aids to show them off, and for shock value, I admit. The look on their faces can be priceless because no one shows of their hearing aids.
  2. Move outside or to a quieter room.
  3. Use the FM system or PockeTalker. Make jokes about being able to eavesdrop with it. Laine Waggoner used to hold the microphone to her listening device under her snack plate, keeping it aimed at the person talking to her.
  4. Get as close to the speaker as personal space allows which creates an intimate feeling. Because I focus on the speaker, they take me for a good listener so I get more out of them than most people.
  5. Once at a banquet, I had the speakers hold my FM system along with the microphone. I heard more than the hearing guests. They suggested I connect it somehow to the microphone next time to avoid speakers walking off with it accidentally.
  6. Take a dependable friend to fill you in on the bits you miss.
  7. Try to focus on one person at a time instead of 4 or 5 people at a table. I have a more success that way and keep mingling.
  8. Walk into the party knowing you won’t hear everything. It’s impossible so give yourself leeway and let some conversation/speeches go by. To make sure I heard all I could at a wedding once, I placed my FM on a small table right next to the couple trading vows. They also let me sit right up front so I could read lips as needed. I still didn’t hear everything but I walked away very happy for what I did hear.

How to handle a movie

It’s surprising how social going to see a movie is. Lots of people like to go to the movies and they like to talk about them afterward. Nothing to do? “Let’s go see a movie!” I went to the theater with friends and family all the time but as my hearing loss progressed, I missed more and more of the dialogue. Background noise started overriding dialogue along with musical scores and things getting blown up. If only the actors would face the audience the entire time, then I might have a chance at lip reading but that doesn’t happen often. Words jumbled together leaving me so frustrated, I wound up in tears so I quit going. I started telling others, “That’s okay, you go ahead.”

Thanks to CaptiViews movies are once again an option for me. Yay!

  1. Find out if your theaters carry CaptiViews. You will most likely need to trade your drivers license to borrow it for the movie.
  2. Be sure to remind the person behind the counter have the reset button pushed in the projector room.
  3. Previews are not captioned. Actually captioning doesn’t start until the movie does… and sometimes someone forgot to push the button anyway.
  4. Calmly as possible (I don’t always feel it but I try look it), go out and remind them to push it again. Occasionally it doesn’t work at all for some odd reason. The management should refund your money and will probably give you free tickets to come again.

Now I can keep up with all the movies I want and and discuss them with friends and clients. Other options are glasses with captions and open captioned movies.

Use humor to defuse hearing loss blunders

No matter how hard I focus, I still come up off the wall answers. When people have the funny questioning look, I back up and ask for a repeat. If I think it’s funny, I’ll repeat what I heard so we can both laugh. “Did you say getting it on or getting along?” It defuses the situation. I think best thing we can do is to be less critical of ourselves. We judge ourselves more harshly than we do anyone else and we need to let that go. We make mistake and so does everyone else.

Yes. It’s a easier to stay home with our captioned TV and movies or curl up with a good book but studies show total withdrawal can lead to dementia. Socializing keeps the brain active and working properly. It’s hard work to keep putting yourself out there, time and time again, especially after a defeat.

Learning experiences happen (breakdowns). I lick my wounds giving myself time to heal. Then I think, what could I have done differently? What can I do next time to improve the situation? How can I make it easier? I refuse to give up that piece of me that loves being social, meeting new people and doing new things. The only failure is giving up.

Try socializing with other hard of hearing people too

So keep working on it. It’s worth it. Don’t forget to try socializing with with other hard of hearing people, which is entirely different. It’s less draining because we know how to talk to each other. We usually know when the other is faking it, laugh, and call them on it. We want them to understand and not be left out. The hard of hearing share experiences, technology and coping skills with one another. We walk down sidewalks slowly, talking to each other face to face and not always watching where we are going so much, enjoying the company. We know to speak one person at a time and repeat without impatience. Finger spelling can be used when hung up on a word or even sign language if enough is known. Seek out the hard of hearing, it’s a gift to experience and you won’t regret it. Find them at local hearing loss groups or by being aware while out and about.

Don’t pass up those social opportunities anymore. Find a way to make it work. You might run across someone who doesn’t want to accommodate you, they just don’t get it and refuse all suggestions. In my experience, it’s rare but we remember them more than all the others who have helped us. Let them go, life is too short and but don’t give up! Keep at it, the world is full of interesting people and there’s lots of life yet to live.

Four Hearing Loss Myths & The Truth Behind Them

Myth #1 – Hearing Loss only affects older people.

Not true. Hearing loss strikes all ages. Babies are born with it and teenagers develop it. Hearing loss comes at ages 20, 30 and 40 years of age from environmental noise exposure and unknown reasons. It can slowly sneak up on a person for years or happen over night. Hearing loss doesn’t discriminate.

Teenagers are a surprising, new addition to hearing loss ranks thanks to MP3 players and earbuds. Some listen to their music so loud, others can hear it too. National Public Radio coined the phrase “ear spray” meaning: “overflow sounds from someone listening to their iPod too loud.” If this is the case, they are unknowingly damaging their inner ear.

Kids have no idea what their future will be like with hearing loss and they aren’t ones to heed warnings. To them, the louder the better. As early as 20 something years old, they will see the results of those years of loud music as they struggle to understand conversation in noisy environments and on the phone. Later, they will wish they protected their hearing. Hearing loss simulators on the internet show what hearing loss is like, maybe ‘hearing’ the difference will lead them to believing.

 Anything over 90 decibels plays havoc with hearing and concerts are typically 115 decibels or louder. For adults as well as teenagers, going to concerts without earplugs also harm hearing.Hearing loss starts at this point slowly with tinnitus (ringing in the ears) after the concert. It may go away after a few hours or take a few days but each time this happens, it wrecks more hearing and it could become permanent. Difficulty understanding speech in loud situations is once again, the first sign of hearing loss.

Many musicians are now wearing specialized earplugs which filter sounds to protect their hearing. As lovers of music, we should follow their example and wear them ourselves. They cost around $20. As Helen Keller said, “Blindness separates us from things but deafness separates us from people.” Ear plugs are worth the price if isolation is the eventual outcome.

Acoustic trauma is the number one disability among our veterans. Roadside bombs, suicide bombers, guns and heavy equipment affect the eardrum, the delicate bones inside the ear and the fine hairs in the cochlea. Many end up with tinnitus as well as hearing loss. The Department of Veteran Affairs figures about 78,000 of our military personnel coming home from recent wars will have some degree of hearing loss. Some will know it now and others in years to follow.

Veteran Affairs has programs in place to help those with hearing loss. They have various programs to help veterans adapt with hearing aids, assistive listening devices and counseling. (A link to the VA is below.)

Hearing loss can also be caused by medication, known as ototoxicity. Well meaning medications can wipe out hearing, a little at a time or all at once. Symptoms are hearing loss, tinnitus and/or vertigo. It can be temporary or it could turn into permanent damage. Good for what ails you now but poison for your ears. Ask your doctor or pharmacist about possible side effects from drugs. Read the warnings on the label or find a list of ototoxic drugs online. (It’s important to talk to your doctor before stopping any current medications.)

Myth #2 – Being hard of hearing means it’s hard to hear everything equally.

This is only true part of the time. The most common type of hearing loss is sensorineural, typically a high frequency loss. This person has normal hearing in the low tones but a severe hearing loss in the higher frequencies creating a mixed bag of hearing. A person with this loss, can hear… and not hear at the same time. As an example, they may hear the garbage truck grind to a halt, the garbage can clatter as it’s being emptied and the thunk of it being set back down again. That same person won’t hear the birds sing, a cat meow or timers go off.

With a high frequency loss, a man’s voice is easier to hear than a woman’s. Children’s voices are the hardest ones to hear of all. They will hear the voice but not understand the words. Many consonants in the alphabet are in the high frequency range, like S, T and the H sound. The vowels in contrast, are in the lower tones so these people hear vowels more than anything. Filling in the missing consonants can be exhausting. When trying to follow a conversation, their mind races to fill in missing sounds to fit the context of the rest of what they heard. Every conversation turns into the Wheel of Fortune. Their brain works double time trying to piece together missing sounds.

Try turning the bass all the way up on a stereo and the treble all the way down. It sounds a little funky and now the beat overrides the lyrics. Go to the extreme, and take out treble all together and you have a profound sensorineural hearing loss. That’s what life is like with the most common type of hearing loss.

Myth #3 – Turning up the volume will help.

Wrong, volume distorts sound. Yelling, turning up the TV, radio or turning up their hearing aid might help a little but it might cause the person with sensorineural loss to miss more. There is no way to make certain sounds louder. The “th,” “sh,” or “f” sounds are tough to shout.

Take the word shout. A hard of hearing person will hear the ‘ou’ or OW sound so well, it overrides the SH and T. Their mind will come up with all the OW words trying to find the one to fit best. Doubt? Loud? Or was it something like proud? Not only that but yelling intensifies the situation, raising unwanted emotions such as confusion and defensiveness.

People often say, “if only he/she would only turn up his hearing aid, I wouldn’t have to repeat so much.” That’s not the case. Turning it up, turns everything up washing out much needed sounds. A delicate balance is needed. Some sounds come across uncomfortably loud causing headaches and/or fatigue along with increasing the frustration. If well intentioned people persistently nag the hard of hearing person to turn it up, the hearing aids may end up in a drawer.

https://commons.wikimedia.org/wiki/User:MCruz_(WMF)The best solution is face to face conversation. Slow down a little and enunciate carefully. Sometimes the person will get stuck on a word, if it’s already been repeated twice and they still don’t understand, come up with a synonym or mime it. The hard of hearing torture themselves enough for not understanding their native tongue so patience is required on both parts. They are doing the best they can with what hearing they have.

Myth #4 – Hearing Aids Restore All Hearing

Flat out false. Hearing aids aren’t called hearing miracles for a reason. Slipping on a pair of glasses can fix vision but hearing aids do not work the same way. So far technology can’t reproduce true hearing so hearing aids are just that… aids. They improve the quality of life for the hearing impaired person but nothing replaces sounds once they are gone. Even with their hearing aids in, they are still hard of hearing.

In the old days, hearing aids turned everything up, even the sounds that were heard at a normal level, making some noises uncomfortable and confusing. The digital age has made great strides for hearing aids in flexibility making it possible for audiologists to dampen unwanted noises somewhat and raise the level of needed high frequencies. To get the most out of a hearing aid, the wearer should keep a list of sounds that are annoying and another list of sounds they want to hear more of. Hearing aids have a huge amount of programming ability and this helps the audiologist fine tune it for personal preference. It won’t ever be perfect hearing but it can enrich the hearing aid experience.

Mechanical hearing picks up other mechanical noises first. Background noise can render a hard of hearing person deaf in conversation. Washing machines, dishwasher, stereo/radios, refrigerators, fans and air conditioners come across loud and clear on hearing aids… better than conversation. Restaurant cacophony distracts from conversation to hearing aid user. Sit as far away from the kitchen as possible in noisy restaurants. The audiologist should be able to make a program for hearing aids to focus in one area instead of picking up surround sound. No matter what, restaurants are a challenge for the the hearing aid user.

Along with hearing aids, other coping strategies are needed. Always face the person with a hearing loss, unconsciously they may be reading lips and facial expressions for cues. Make sure the area is well lit. Turn off all possible background distractions to make it easier on both parties. The hard of hearing person should take responsibility for the conversation by letting others know they need a little extra help in getting by in conversation, telling people to slow down and asking for a repeat or rephrase as needed instead of bluffing their way through a conversation.

Think about a hearing loss support group. If you haven’t tried the SayWhatClub yet, give them a try. If you want to try something different, let me know.

Websites with Additional Information

Occupational Noise Exposure on Occupational Safety and Health Administration (OSHA)

http://www.osha.gov/SLTC/noisehearingconservation/

Hearing Loss Prevention

http://www.noisyplanet.nidcd.nih.gov

Ototoxicity

http://vestibular.org/ototoxicity

Hearing Loss Simulator

http://www.betterhearing.org/hearing_loss/hearing_loss_simulator/index.cfm

Department of Veteran Affairs

www.va.gov