Hearing Loss For Me

At about 14 years old I started losing my hearing a little at a time.  Back then I was the typical teenager wandering around saying, “Huh” so no one caught it.  I got by but all the signs were there such as making sure I sat up front in vehicles so I could hear better.  I talked loud and had to learn to feel my voice.  I asked for repeats often.

When I was 19 tinnitus struck with constant ringing in my ears 24/7.  (Tinnitus is often the beginning stages of hearing loss.)  By 23 years old my hearing loss was obvious and my mom told me to go get hearing aids.  So I did and we thought that cured my hearing loss except there were times when I still had troubles understanding people.  They would ask, “Are your ears on?”  Yes, they were and I didn’t know what I couldn’t hear so I started bluffing, pretending to hear, so I could be normal.

I continued to lose my hearing a little every year.  The doctors don’t know why, I stopped asking years ago.   A few times I experienced big drops than which seemed to coincide with periods of heavy stress.

I have a profound high frequency hearing loss with only a mild loss in the low tones. I hear but I can’t make sense of what I hear.  In speech I hear vowels best but consonants are difficult.  My brain is constantly scrambling trying to fill in the missing sounds to make sense of the words I did not hear correctly.  My brain continues to work while I listen to other sentences hoping for clues to what I missed.  If I get no immediate clues I am lost and have to stop conversation to ask what they are talking about or give up and fake it.

In my bluffing days,  I picked up the mood of the conversation, watched facial expressions and listened for people’s tone of voice to the ‘appropriate’ way to respond.  I could get by without understanding anything quite often.   (At times it got me in trouble agreeing to something I shouldn’t have.)  Then I realized I was wasting the other person’s energy by  doing this and hurting myself worse.  Now days I ask for repeats or find the topic of the conversation.

However there are two exceptions for bluffing.  Occasionally I run into people who will not face me and talk clearly. If I’ve asked a few times to face me and they won’t, I allow myself to go into bluffing mode, I call it my energy saving mode.  If they don’t or can’t work with me why should waste tons of energy trying to hear them?  Only those closest to me seem to know when I fake it and bust me.  I also tend to slip into bluffing when I’m tired without realizing it.

In 2009 answering the phone was extremely difficult and stressful.  When I answered the phone in at work it was no longer professional.  There were many repeats and I would still be unable to understand what the other person was trying to say.  People got frustrated with me while trying my best to get names  and numbers right so I developed a huge dislike for the phone.  I weaned myself off the phone ignoring it almost totally and using captions on the internet only when I had to.  Once in a great while I talk on the phone now thanks to captioned phones but I went so long resisting the phone I got out of the habit.  Email and texting are my main modes of communication.

Now I am 49 years old (2017) and I’m on my fifth pair of hearing aids.  In the best of conditions (sound proof booth) I have a 65% word discrimination.  The world is not a sound proof booth and as soon as I step outside my word discrimination goes down but lucky for me I use a lot of lipreading these days.

Getting involved with the hearing loss community healed my pain and gave my own hearing loss a purpose.  These days I work at the state Deaf and Hard of Hearing Center part time and volunteer for more hearing loss causes.  I belong to my local Hearing Loss Association of America Chapter, part of the Loop Utah team and I belong to the SayWhatClub.  I highly recommend finding your hearing loss tribe too.

Hearing loss can be a challenge and it’s best to keep a sense of humor along with it.  When I can repeat what I thought I heard, “Bun crunchies” and repeat it back to the other person who laughs then I am ok.  (It turned out to be “band concert” by the way.)   My blog posts focus on hearing loss challenges and even triumphs.  There’s a lot of learning experiences in those posts and I’m proud to say a lot of growth too.

143 responses to “Hearing Loss For Me

  1. LOVE, LOVE, LOVE reading your writing, Chelle! I am SO glad we were roommates at the HLAA Convention and definitely want to stay in touch!!!

    • I’m really glad to have met you too. I had the best time at the convention and I’m so glad we were roomies. We will stay in touch!

  2. Hi, Chelle. I found your blog and glad to meet a fellow hearing-impaired person. I’m also in my 40s and, believe it or not, you are the first hearing impaired person I’ve ever met (if you can call this meeting). So isolated and clearly feeling like the only one of my kind.

    I have a question: what kind of hearing aid do you wear? I am shopping for a new pair as we speak. In fact, I go to Costco tomorrow to pick them up. I’ve been wearing Beltone for 30 years, but now I just don’t like what they have to offer. In the last 6 months, I’ve road tested about 6 different Beltone hearing aids and none worked better than my old ones (and my old ones barely work). So now I’m on to Costco hoping for better results.

    Anyhoo, I’m glad I found you.

    • Greetings Tricia! I’m happy to meet you. I lived in small towns for many years and was the only hard of hearing person my age I knew. I remember how isolating it is. The SayWhatClub saved my sanity, an online community for the hard of hearing. (www.saywhatclub.com) Now that I live in a big city, I know others person to person and that helps too. I met someone else at the HLAA convention in Rhode Island who hadn’t met anyone her age with hearing loss either. She loved being around all the other so if you can, attend a hearing loss convention somewhere. There’s 3 main ones here in the states and they hold in different places every year.
      I wear Phonak Naidas. I don’t think I’ve ever had Beltones. I go through typical audiologists but I hear people have good results with CostCo’s too. What kind of hearing loss do you have? I have a profound loss in high frequencies, sensorineural, both ears. My last pair was Widex SensoDivas and I liked them a lot too. Anything is better than the old analog ones, ugh! I had Starkey before that and I can’t remember what brand my first ones were. Let me know how it goes for you. I’m interested.

    • Tricia – not sure this apt information anymore, but I would highly recommend you check out Phonak hearing aids with sound recover technology – like what the Naida’s have. Good luck with it all!

  3. Hi Chelle! I have just come across your blog and haven’t been able to stop reading. Not only can I whole-heartedly relate as I have hearing loss stemming from childhood as well, but I work in an audiology practice, and volunteer for a Non-profit hearing clinic – HearCare Connection in Fort Wayne, Indiana. I would love the chance to speak with you (or email, whichever you are most comfortable with)… my email is mary@hearcare-indiana.com or you can reach me at HearCare Audiology’s office – 260-485-1231.

  4. Thanks! Wish I was closer to you so I could give you a try as an audiologist. 🙂 Email sent.

  5. Hi Chelle – In honor of Better Hearing Month and Tinnitus Awareness Week (May 19 – 25), I’d like to invite you to share with your readers the 411 on tinnitus—a hearing condition affecting one in five Americans.

    As you may know, tinnitus is the perception of constant ringing in the ears which can be caused by exposure to loud and sudden or repeated noise.

    If you’re interested, I can email you some quick facts, a personal success story and a fun infograph that you might find useful.


    • I have posted in the last 6 months about tinnitus. I’m away from my computer however and it’s hard to search on my phone. I’ll look for the post when home Monday and send you the link.
      I noticed on the plane yesterday, my tinnitus was trying to complete with the jet engines. When I got off the plane, it went back to normal. Weird.

      • I remember feeling similar, “The doctor is going to think it’s all in my head.” That was when I was 23 years old. I made an appointment with an ENT and while waiting in the office, I almost walked out thinking, “This is silly,” but I stayed and the doctor told me I had a hearing loss and needed hearing aids. Hearing loss is happening more often in younger generations unfortunately. It’s a noisy world out there, immune systems go haywire and it’s stressful. It’s amazing what stress does to a body.
        Hearing aids help a lot but they don’t cure my type of hearing loss, sensorinueral or high frequency loss which is the most common kind. From what you say above (and I don’t think the doctor will dismiss you), you might have it too. It’s hearing but not understanding. I know people are talking but can’t make out all the words. Childrens voices are hard to hear and the phone is a bitch. I hear about 20% more with my hearing aids in and every little bit helps.
        At the beginning of my hearing loss, I faked it a lot which means I missed a lot of opportunities, agreed to the wrong things sometimes and came up with off the wall answers. As long as I was hiding hearing loss, it was embarrassing. When I started being upfront about hearing loss, I found most people are more willing to repeat if they know about it.
        Are hearing aids a must? No, some people get by without them, mostly because they are expensive. It would be good to learn coping strategies from others, if you are on FaceBook, try SWC Gen-y (SayWhatClub) or try one of their emails lists (which can also be read as archives). This is easy daily support where you can ask lots of questions and get answers. I’m happy to answer questions too.
        If you are having troubles on the phone, think about a caption phone. Here’s a catalog with a few listed: http://www.harriscomm.com/index.php/equipment/telephones/captioned-telephones.html Sometimes volume isn’t enough and captions as back up for those fast talkers or high pitched voices is really nice.
        Hearing loss is a little scary. It’s not the end of the world, it just means doing things differently. It’s not always easy but everyone has their challenges in life. Finding support has helped me lots.

  6. I found it very interesting and a little scary reading your blog. I have been struggling with my hearing noticably for about 5 years now – incidentally since the birth of my first child, but Im not sure that it’s related! Im 39 years old and have been feeling like i just shouldnt be having difficulty hearing at this age. I have huge difficulty understanding my partner when he uses his low register and kind of mumbles. I struggle to hear my kids if their back is turned away from me, and using the phone has become a nightmare. I have to concentrate SOOO HARD to make sense of the person on the other end and its embarasing to ask them to repeat themselves all the time – I have my own business so I desperately need to hear what my clients are saying. My confidence is shaky and I hate going into places where there is lots of background noise because I just can’t hear a single converstation.
    I have no idea what to do next. Im afraid my GP will just dismiss my concerns. Are hearing aids the only option? Im not sure how I will afford them. Im so nervous to get checked. Where do I start?!

  7. It’s good that you write this, it goes under most people’s radar.


  8. Good read! Of course I know exactly how you feel. Thanks for sharing. 🙂

  9. Very good blogs, I like them all. I actually write some in my own language. I am so surprised how much you can find about deaf people but it seems no one worries about hard-hearing people like me or you. Thanks for your inspiring words. As I read your blogs I just smile and say to myself:”Me too!” 🙂

    • We hard of hearing people are trying to be heard! I think most of us are used to being wallflowers so it’s hard to put ourselves out there. Blogs are the easy way to do it. I wish I could read in in other languages. I sure admire those of you who can.

  10. Hi my name is JayeJaye. I have had chroinic ear infections since I was 9 months old with what you call the Asian Flu. I am now 38 years old. So as you can see a lot of years to have ear infections. I now can not hear people, sounds outside, my car running, a television or a radio. I am always and have always asked people to repeat themselves all the time. Hoping they don’t get mad. Some do and some don’t. I have not had hearing in both ear for a month now. I can hear if I put my ear closer to their month. But other then that I feel like someone put the mute button on and forgot to turn it back on. I have been told by my husband that I speak way to loud. I have to always say that I am sorry to him and a lot of other people because they think I am upset when I’m not. I just do not how I will get use to not hearing. I don’t know if hearing aids will even help me. But for me it upsetting not being able to hear. I wish my friends and family could understand what I am going through. So what do you think I should do. Any advice would be great. Oh and before I forget I scare very easily since I can’t hear. Really don’t like that either.

  11. Hi JayeJaye. You are a brave person and it’s hard to navigate the murky waters of hearing loss. It sounds to me like you need some support. If you don’t live near an Hearing Loss Association of America (HLAA) chapter or Association of Late-Deafened Adults (ALDA) chapter then check into the SayWhatClub at http://www.saywhatclub.com. They have several email lists and lots of people receive support and ideas through their email lists. They have helped me lots over the years.
    I used to talk too loud too at times though I’m not deaf. I learned to feel the pressure in my throat, too much is too loud. I think I’ve gone the other way and talk too soft now.
    My boyfriend is ADD and he scares me unintentionally often. He learned to make more noise or sometimes flip lights on and off so I don’t jump halfway out of my seat when he suddenly appears. I also make sure my desk faces the door so I have a visual on what’s coming.
    It amazes me when I run across people who think it’s funny to scare me, such as my middle son and a friend of my boyfriends (he’s why I moved my desk). I finally told them “Scaring a deaf person is a real challenge eh?” They both stopped.

  12. Samantha Camarca

    Do you have to talk to people you don’t know very well, often? How do they act when you ask for them to repeat themselves? Do they often get annoyed or are the mostly patient?

    • Most people (grocery store, banks, etc) are happy to work with me when I tell them why they have to repeat. When I’m telling them why, (I say I’m over half deaf) I also tell them I lip read and need to see them to hear them. I’m not deaf yet and I hear but half of it is just noise. Getting them to face me proper makes all the difference in the world for sound and lip reading.
      I’m totally open about my hearing loss and don’t mind explaining myself. The more open I’ve been, the more accommodating people have been and I rarely run across the bad apple.

  13. Hi Chelle,

    I’m very teary reading your story (ok, bawling is more apt). it’s so similar to mine (not the be self-centred here!) and i’ve spent the last week in this state of excitement and apprehension – i’m finally going to not only accept but embrace my hearing loss. this is huge … my former life was so centred on me trying to hide it. i spent my entire graduate school time not telling anyone i was hard of hearing. i guess i thought i could “pass” as hearing. so much energy spent constantly worrying about it and anxiety about it. exhausting!

    So now i’m trying to ingest a dizzying amount of information about a culture i for so long tried to not be a part of. it’s been really humbling.

    I look forward to following your journey!

    • Congratulations on your next stage in life, you will go far! It will get easier but there will be some difficult situations still, there are times I still break down and cry but that happens less and less. We’re human, it happens but what matters is getting up again, learning from it and going at it from another angle. It can be done. 🙂
      What gave my hearing loss meaning was volunteering for the cause and helping others which gave me a purpose. Slowly but surely I became braver and braver being around others who already faced everything I had and now I can advocate for myself and others too. You’re on the right path now too and you’ll find your way too.
      Thank you for your comment, very touching.


    Hello Chelle

    I have been developing Meniere’s Disease since I was in high school. I am now 48 and its getting worse. My right ear is almost deaf while my left,which was normal,is also getting bad.My question are there any hearing aids that would be able to help me? I also suffer from tinnitus.


    • Hearing aids will help mask the tinnitus during the day and at night if you wear them to bed. Unfortunately I don’t know a lot about Meniere’s. I don’t know if hearing aids would help the dizziness but for some reason I don’t think so. I sure feel for you. I had dizziness issues three times in the past, once because of a prescribed drug, another time due to a sinus infection and another time was after a weekend in high rise hotel and riding the elevator too much. All three times were awful and I have a lot of compassion for people with Meniere’s now because of it.
      I belong to the SayWhatClub and there is a Meniere’s specific list on it for people with it. There are a number of people with experience on the email list and they help people new to it often. Sorry I can’t give you more advice. 😦

    • I too have Meniere’s, which has caused my right ear to become completely deaf and my left ear to become variable in hearing. I have constant tinnitus. I wear the Phonak BiCros hearing aids (which are BTE, behind the ear), which are invaluable in helping me to understand speech in background noise and for helping me with word clarity. I use it with the Phonak Roger Pen to filter out background noises like those in restaurants, airports, concerts, busy stores, etc. The Phonak BiCros hearing aid (I have the Audeo model) is the hearing aid indicated for people with hearing loss caused by Meniere’s, according to my audiologist. My local vocational rehabilitation office here in Texas paid for the hearing aids because I cannot work without them. The BiCros is unique in the way it works, and I recommend looking into it.

  15. I lost my hearing when I was 19 years old, im 21 years old now. Im trying to be strong about it but its so hard because I know its a big disadvantage in life, even though I do wear hearing aids I still wish I could just be cured.

    • It is awfully hard sometimes. The best advice I can give you is join a hearing loss group of some sort or even hearing loss classes if you have a local deaf and hard of hearing center. Being near others who have traveled the same path seems to help a lot. They are inspiring and turn into mentors. If there’s nothing local for you and you don’t mind an email group, try the SayWhatClub. They have a Facebook page and group as well, one of the groups is geared for 30 and under. Hang in there! It can get easier.

  16. I desperately need help with this topic for my husband and don’t know what to do. Is there a place that can talk to him?

    • There’s lots of places for hearing loss support. There’s the Hearing Loss Association of America (HLAA) and they have chapters sprinkled all over. Attending a group face to face is very helpful and you will encounter others who’ve been there, done that and can help. You can also look up your state deaf and hard of hearing center, sometimes called the Commission for the Deaf and Hard of Hearing. They usually have a lot of resources to help people cope better.
      If you are too far away for help like that and have email, try the SayWhatClub (www.saywhatclub.com). They have multiple online email lists to get support from. When I first sought support, I was too far away from anything but email and they helped me lots and lots at the beginning. You and/or your husband can join one of the lists and you will learn a lot.
      One of the best books I ever read on hearing loss was Missing Words: The Family Handbook on Adult Hearing Loss by Kay Thomsett and Eve Nickerson. After years and years of being diagnosed with sensorineural hearing loss (high frequency hearing loss) I finally understand why I hear the way I do or better yet, why I miss the words/sounds I do.
      I hope that helps.

  17. This was great to read. I’m 34 and finally got my hearing checked out. I found out that I have sensorineural hearing loss (moderate in one ear, severe in the other), but my doctors and I have no clue what caused it or when it started. The most likely culprits are a difficult-to-diagnose autoimmune disorder or a past virus. The most maddening thing about this has been that I don’t know when it happened or how long it’s been going on. I remember plenty of times when I thought that I didn’t hear as well as other people, but I can’t figure out how far back they go. Sometimes, I think that this was happening since I was about 14; sometimes, I think that this happened within the last 5 years or so. My husband and close family members are convinced that it must have been really recent, since they never noticed it.

    Even when I took myself in for the hearing test, no one had prompted me to do it. It was something that I had been meaning to do for some time (I can’t tell how long, truly), and the signs in front of me finally just said, “Go already!” I’d figured that it was probably just a slight hearing loss–nothing serious. Now it feels like there’s been some major plot twist at the end of a movie (“You haven’t been hearing this whole time!”). Once I knew that I had hearing loss, I started noticing all of the words that I was missing and all of the things that I do to cope with it. It’s been unsettling. I’ve fooled myself and everyone else. It wasn’t a conscious decision to hide this, truly. I have faint memories of mentioning not hearing a presentation or speech to this person or that, and the person would usually say, “Oh, I had trouble hearing too.” I think I even might have brought this up to a doctor a while back, receiving a similar dismissal.

    I really identified with this part of the blog: “Sometimes I run into people who no matter what cannot speak up or talk clearly. I ask them to look at me when talking or tell them I can’t hear to please speak up. If they don’t or can’t work with me then I will go into fake mode.” That’s exactly what I do too. I didn’t even notice that I was doing it! Even the people close to me didn’t notice. Coming to terms with my hearing loss has been a strange process of re-examining all of my social behavior–another reason that not knowing how long this has been going on has been maddening to me. How long have I been this way, socially? Have I offended people? I have no clue.

    Anyway, it’s good to find people who’ve “faked it” online. I think that it’s truly not conscious for most of us. It’s an autopilot coping mechanism, and it doesn’t mean that we’re fake or not caring; we’re just doing what we have to do to get through a conversation in one piece.

    • Thanks for your comment. At one time they thought it would be auto-immune for me too. This was back in the late 90’s and the concept was new enough my family doctor (who gave referrals) thought it was a bunch of BS but gave me a referral to an immunologist anyway. He wouldn’t collaborate with my ENT. It turned out he sent me to an allergist instead, the wrong kind of immunologist, lol. It was big fat joke with me excited to have a cause at last but getting the run around in the process.
      In the meantime, I researched it on my own and found out the treatment was steroids and immune suppressants. Then I found two people in the SayWhatClub who had it also and were undergoing the treatment. One lady said she was doing good and thought it was working. The other lady was having a terrible time with the dosage and getting sick all the time. After a lot of thought I decided not to pursue it with my family doctor after all and let it go.
      Eight years later another ENT jumped on the chance of it being auto-immune and wanted to treat me but I asked him if it was still immune suppressants and steroids and he said yes. Was it guaranteed to halt the loss? No. Two years after that I ran into the lady who felt the treatment was doing her good ten years before and found out she went totally deaf anyway. Whew, glad I didn’t go that route.
      Yeah, I wandered around for around 6 years without knowing I had a hearing loss. Then I spent a few years knowing but not doing anything about it because the ENT who sent me home with tinnitus and no coping strategies pissed me off. He said I didn’t have a hearing loss back then but I’m pretty sure I had at least a mild one. I was mad enough at doctors for awhile I steered clear until my mom told me to go again.
      Faking it is our first coping strategy. It’s not the best coping strategy but we don’t know that until people start pointing it out. Even all these years later and many years of knowing better, I still do it on occasion.

      • Yep, I went on prednisone for a month, and it didn’t help my hearing a bit. It was worth a try, I guess. My ENT sent me to a rheumatologist because of my MRI and a positive ANA blood test result. In fact, my ENT said, “It’s clear that you have an autoimmune disorder. We just have to figure out what kind.” I brought a list of joint, circulation, and skin issues that I’ve had over the years to the rheumatologist, in case it would be helpful in diagnosing me. He laughed at me, said, “Is this all of the stuff that’s wrong with you?!” Then he never looked at it. He said that my joints were awfully touchy and that I probably had fibromyalgia…even though I don’t have chronic pain and even though I’m pretty sure that fibromyalgia doesn’t cause hearing loss. I was so disheartened by the experience that I’ve given up trying to figure out what’s wrong. If I get another symptom, I’ll deal with it then. Like you’ve said, the treatment for most of the autoimmune stuff is so limited, with so many annoying side effects, that it’s not really worth it until then. The hearing aids are expensive, but they’re definitely worth it.

        On the one hand, I think that autoimmune diseases must be difficult to study and understand, so I can see why the treatments haven’t progressed that much. On the other hand, I think that doctors could get a lot further with their research if they actually listened to their patients (especially female patients) instead of dismissing them as hypochondriacs or trying to slap a wastebasket diagnosis on them to shut them up.

      • Sorry to hear about your run around and frustration. I have mixed feelings about doctors. I go to one when I need antibiotics but otherwise I stay far away. Like you, I will deal with things as they come.
        I once filled out a questionnaire at my first office visit somewhere and checked all the boxes as things wrong with me. The doctor or nurse never even noticed which proved those papers are a waste of time. They are just going to ask you, “What seems to be the problem,” anyway. In 46 years I don’t think I’ve run across a doctor I’ve really respected. I had a nurse practitioner I really liked a long time ago.

  18. Hi! This story left me in tears because I am only 20 years old and I have been experiencing hearing loss. I’m going to go see an ent doctor this Friday so hopefully they can figure out what’s going on or help me get a hearing aid. I feel extremely sad because I have two kids and Im so because I’m afraid I won’t hear them cry at night or even call for me. But at least I know I’m not alone. Thanks for sharing your story with me.

    • Thank you for leaving a comment. Sometimes sharing the difficult parts works best because we know we aren’t alone.
      I remember fearing I wouldn’t hear the babies cry at night but I always did. That pitch came through clear and I was on top of that, right there for them. Trying to understand what they were saying while they were crying was often difficult. My middle son had night terrors when he was around 4 and 5 yrs old. He tried telling me something each time through his heavy sobbing and I could never understand and I never wanted to understand so much. I felt helpless so we’d sit on the couch in the wee hours of the morning crying together until it passed. Maybe that’s all he needed. He never remembered the next day either.
      Looking back 20 years now, I’m not sure anyone could have understood him at that point. It was heart wrenching sobs and distorted words in between but I was there for him, I was the parent who was there living it with him and I’m sure you will be there for your children too. There’s that mother’s sense that kicks in. Even if you lose your hearing totally, there are alerting devices out there to keep you independent.
      Another thing I can say about raising kids as a hard of hearing mother, my kids are awesome about accepting people with disabilities of all kinds, not just hearing loss. They are always helpful too. You be the best you that you can be, even with hearing loss, and you can’t lose.

  19. Anthony J Aguilar

    Thank you for this. I’ve been losing my hearing since I was 18 years old and a senior in high school. It began in my right ear and has since traveled to my left. I’m 49 years old married with three kids. I’ve noticed that since my hearing has grown steadily worse over the past four years my family sometimes get annoyed that I am unable to understand what they are saying.
    I find myself getting depressed and not understanding why they would feel this way for something that I can not help. I’ve been to the doctors and have tested by the audiologist who has fitted me for hearing aids. I fear that someday I will be totally deaf. I know you have mentioned some websites and/or literature on hearing loss of the individual but, is there anything out there for the families?

    • Sorry for the late reply, this came through while I was traveling and I’m just now catching up. The book Missing Words by Kay Thomsett and Eve Nickerson have helped hearing people understand hearing loss better. If you live in big city see if you have a state agency for Deaf and Hard of Hearing, sometimes called a Deaf and Hard of Hearing Commission too. Usually there is a hard of hearing specialist and he/she might be able to help. Our state center has a Living with Hearing Loss class based on Sam Trychin’s work. He sells books on his website, http://www.samtrychin.com. A lot of his stuff is about hearing loss and relationships.
      It does hurt when people don’t understand, especially family members. I’m sorry. When I fully understood my own hearing loss was when I could tell people how I hear, what helps and what doesn’t. That was a big step forward for me. If you have a high frequency hearing loss, look up the speech banana, print it and draw in your own audio gram. That might help too.

  20. I’m experiencing the same thing right now. It’s frustrating to the point I don’t want to talk to people I don’t know. I quit my job because I fear answering the phone and talking to the customers. I worked for Bank of America for 8 years and everyday I struggle. I’ve tried hearing aids and it seems like it doesn’t help me either. Thanks for sharing your experienced with the hearing loss. I wish I could be like you and do tj

  21. Hi.

    I’m 25 years old, I’ve had a hearing loss since I was born, serve to profound on my left ear, and mild to med on my right. I just wear s hearing aid on my right ear.

    I am still doing the faking thing and haven’t made a friend who is deaf or hard of hearing, from what I’ve read the deaf community is not entirely accepting of people who can still hear or are actually deaf.

    Back to the faking thing, just the other day at work everyone was joking around and I said something that was taken as an opening for a joke or revenue so someone made a joke, I laughed and ignored it. My coworker said, “that totally went over your head didn’t it” the sad part is, it did but only because I didn’t hear the entire conversation and was just faking it. I don’t correct people or tell them anything if I can’t hear them.

    Too long now I’ve played the silent victim card and I have no idea how to break free of this cycle, my parents don’t understand and are dysfunction tonal themselves. I feel so lost and alone. I’m limited due to my hearing hmm the point is not to throw myself a pity party, I just am wondering what your advise would be?

  22. Bluffing is a tough habit to break. I was probably closer to 30 yrs old before I started breaking the habit and that’s only because my ex-husband was outing me all the time. At first I hated it when he did that, I felt embarrassed for a couple of reasons; now that person knew I couldn’t hear, now they knew I totally bluffed them and because I wasn’t ‘normal.’ After more than a few times of him doing this to me I realized people didn’t shun me because of my hearing loss and most of the time they wanted to help and make sure I understood what was going on. So I started telling people myself that I was hard of hearing which is really only the first step and it helped a lot. I think a lot of people thought I was slow on the uptake too so when I started saying I could hear, I started replying more intelligently and their view of me changed.
    The second step is telling people what you need to hear. I used to tell people I was hard of hearing only so they spoke louder but didn’t necessarily face me so I still had a hard time understanding. Then only in the last few years have I started telling people I lipread (which I do but I’m admit I’m not the best) because lipreading equals face me, they know I have to see their lips. I’m sure you are a lipreader having growing up with it so getting people to face you will make a big difference.
    Another thing that helped me was finally understanding my hearing loss enough to explain it to others, mostly those close to me. “Yes I hear voices but I can’t understand what’s being said because a lot of consonants are in the high frequencies where I’m deaf. Most conversations are like The Wheel of Fortune with letters blocked out so my mind races to fill in the blanks. That’s how I hear.” I don’t take the time to tell casual people this (grocery store clerks and such) but I do for anyone I see regularly.
    I hope that helps to get you started. It’s hard to break habits and so scary to admit we may be different. It’s taking like stepping off a cliff and not sure where we are going to fall but I think you will find it’s not as big as you fear it to be.
    Sadly you will run into people with little patience for facing you and/or repeating. Try explaining everything above and if they still don’t work with you it’s time to let them go, it’s not worth your frustration or theirs to keep hanging on to something that isn’t going to work. If it’s someone you can’t avoid, keep contact to a minimum and try to find a way around working directly with them. The good news is these type of people are very few. You will find most people want to help.
    Good luck to you and my best wishes. It sure is a journey but you can make it better. Feel free to pop back in for needed ranting or to share your good experiences.

    • Also, if you are on Facebook consider joining this group SWC Gen-Y. It’s part of the SayWhatClub. You will find others in your age group to talk to about all this stuff and how they handle it as well. I had no one in my age group for years and it is lonely. Finding the SWC in the late 90’s really helped me.

  23. Hey Rich. I’m in my early 30s, and finding folks my own age with hearing loss tends to be difficult. I joined the SayWhatClub after seeing this blog, and it has helped. I read a study recently that people benefit psychologically from complaining in large groups. It helps you deal with the hardship when you can all complain together! Anyway, that’s mainly what I end up doing on the list–saying, “Doesn’t this stink?” and people who get it will say, “Yeah! It does! Happens to me all of the time!”

    I bluffed for 20+ years before even getting my hearing loss checked out, so I know how entrenched it can be. Lately, if I were in a situation like that, I’d just say to the guy, “Actually, I have hearing loss, so I didn’t catch what somebody said that was so funny.” I’ve found that just telling people feels pretty freeing. It keeps people from calling me ditzy and also just gives them a heads up for future communication scenarios. Some people even find it interesting. I used to be afraid that I’d depress people or make them think that I’m weird, but really, if I say it like it’s not a huge deal, nobody else makes it one.

  24. I’m really scared know since I was 11 I started losing my hearing know I’m 19 I’m finely going to the doctors about it because my getting tittnuse so I’m scared this will happen to me if I will slowly go death

    • It is scary and a whole new way of doing things but it isn’t the end of the world. Educate yourself on your kind of hearing loss, the devices that will help you and don’t be afraid to advocate for yourself. Learning all those things has helped me a great deal in my hearing loss.

      • Ya scary and panic attacks and left out of everything. 3 years. Lost hearing on both ears in a 2 1 week. Doctor’s and surgeons I seen. About. 12 or more. Mris and they Wright everything is fine. Am very severly depression and am distance from everyone and they walk away when I can’t read there lips. 100% deaf in one ear and 90 % in the other. Can hear nothing. Only vibrations from people walking in the house or slamming a door I can feel it but not hear it. Been approved for a inplant and had all the test done and menigist shots and just waiting for a tex for surgery. 4 times been threw this and never got my inplant. Am been hospitalized a couple times. Panic attacks that never went away. And have the worst ringing tinnitus in both ears. Can focus. Then all that caused seizures and I really don’t know what to do ????

      • My hearing loss is for unknown reasons too and for a long time that was hard to accept. Why, and why me? I can look back and speculate…scarlet fever at 14? Being sick all the time and all the antibiotics? (Ototoxicity) Overly sensitive ears? Later it was thought it could be autoimmune inner ear disease but that was never followed up on because of doctor referral foul ups. Now all these years later I just accept I have it. I have it and how can I deal best with it and still do everything I want to do.
        It’s hard to ‘train’ hearing people to speak to us properly. It takes years and then there’s still slip ups but it gets better the longer you are around them.
        For tinnitus, if you have hearing aids (not sure you do with the severity of your hearing loss) ask if they have tinnitus program you can use. This plays tones of some sort (don’t know because I haven’t used it) which I know helps a friend of mine with severe tinnitus. I have another friend who is deaf and doesn’t use hearing aids and also has severe tinnitus, she finds massage helpful. There’s some webpages out there that talk about mindfulness and tinnitus, try looking that up too. Tinnitus is a big challenge so keep at and eventually it will plateau out and become a little easier to deal with.

  25. Have sudden hearing loss in one ear and at times severe tinnitus since 5 months ago. This blog is really helpful. Thank you, Chelle.

  26. i just loved reading your blog. I saw myself when i was reading it. I am from india. I find it difficult and challenging many times and at many situations and sometime i just fake it. I use resound alera

  27. Thank you for your comments. I still fake it sometimes, when I’m tired mostly. It gets exhausting hearing mindless chatter and so I’ll fade in an out to conserve energy then too.

  28. Hi I just stumbled upon your blog. And wanted you to hear my story and maybe give me some advice. I really noticed mine in my junior year of high school. I went to a audiologist my senior year. The lady told me I was in need of a hearing aid, but back then I just always told myself it will get better. So I begged my dad to not get me one. I thought it would pass. But here I am 21 I finally went to the audiologist again and finally decided that the people telling me I need one are not trying to make me feel handicapped. That they are trying to help me. Right now my left is worse than my right. But my right is still going too. All I can think about now is how fast will it go from here. I’m scared that I will never be able to hear my daughter talk when she gets older. I’m terrified of the looks people will give me when they see I have a hearing aid. I just need to know how did you Cope with your hearing loss? I’m scared and really don’t know what to do. Any advice would help. Thank you

    • Sorry it took me a while to get the comment posted to the page, I was out camping with no cell service.

      I have so much to say that I don’t want to peck it out on my phone. When I can sit down at my computer I will reply properly b

    • Hey Haley. I also noticed my hearing loss in my teens but waited until this last year (in my early 30s) to do anything about it. To reassure you about the hearing aids, I should tell you that there are some really discrete behind-the-ear models right now. Mine match my hair and are very small. No one ever sees them! Even with my hair up, they’re hard to spot. Some people are really comfortable letting people see their hearing aids, but if you’re not there yet, it’s OK! You don’t need to be!

      Getting hearing aids is a pain for the first couple of weeks as you adjust, but after that, it’s soooo nice. I pick up on so much more that people say now! It’s the hearing LOSS that’s the problem; the hearing aids are the thing that really help! And if your hearing gets worse, know that technology is probably good enough to help you out a lot with that. I have friends with cochlear implants that work really well for them. They’re also often really discrete and hard to spot.

      The biggest thing that helped me was finding the Say What Club through this exact blog. I went to the convention this year, and when I talked to everyone, they were just like me. Just regular people with hearing loss. They had families, friends, jobs, and full lives. I think that we all have a dire impression of what being “handicapped” is like–like it changes you into a different class of person. It doesn’t. Being hard of hearing just means that you’ll have to learn how to speak up for yourself and tell people what you need now and then. Like at a restaurant, I say, “I’m hard of hearing, so if you could seat us in a corner, that would be great.” Heck, the people who I dine with *love* that! We get better tables! Anyway, having a physical difference doesn’t make you into a completely different person. You’re still you.

    • I finally have time at my computer and can properly reply to you Haley. I’m not really fond of the term handicapped or impaired or even disabled because I feel ‘able’ to do a great many things. Because of my hearing loss I have to do somethings differently which meant letting go of old ways and finding a way around the hearing issue I was having. It’s taken me about 20 years to get it right but that’s because there was no internet to begin with and so little support. As Kim says, joining the SWC in the late 90’s made HUGE difference. It helps to find others with the same issues so you can find coping strategies to fit your needs as there are a number of ways to handle any given situation. If you aren’t afraid of email lists, join one of their lists. If that’s not your style, join their closed Facebook group to find the support needed. I learned a lot from the good people in the SayWhatClub. (www.saywhatclub.com)
      When I got my first pair of hearing aids I remember that being terrified of people noticing my hearing aids too. I was recently divorced and started dating again. On my first date I waited all evening for him to bring up my hearing aids. He took me to dinner and as we lingered over the food and got to know each other a little more, I kept waiting for him to ask me about my hearing aids. I kept expecting him to tell me I was deformed (the ex husband used to tell me I was defective) or ask if I was mentally handicapped. On the drive home the suspense was killing me! Was he just being nice and not mentioning them (my hair was cut short and above my ears)? Was he going to drop me off and never call again? At a stop light I had release the pressure so I opened with something being a little hard of hearing and these new hearing aids and I even said, “I’m sure you’ve noticed by now.” He hadn’t seen them he told me and then leaned way over in the dark truck to get a closer look at my hearing aids. I thought I was going to die but at least the suspense of it all was over with. Once home he dropped me off, kissed me and asked me for another date. After that I never worried about people seeing my hearing aids again because most people aren’t looking at my ears.
      I raised 3 kids who are all in their 20’s with my hearing loss. They never knew me as a hearing person and I think I raised 3 very accepting kids of differences. Sometimes my kids tried to take advantage of my hearing loss when they were little but the other adults in our life made sure it was halted ASAP. I asked for respect and got it. They learned to to repeat as often as necessary or come up with a synonym if I was stuck on a word. All the TVs in the house had captions even if it was in their bedrooms because who knows when I’d pop in and sit down to watch TV with them. In the car they could have music or talking but not both. Sometimes they would help me understand people in public when I couldn’t understand what they were saying. They are good kids and I don’t think my hearing loss hurt them or burdened them in anyway.
      I have two grandsons now and my hearing is worse than when my kids were growing up. The oldest is 4 1/2 and when he was born I too was afraid I’d never hear him and bond with him but ha! We have a very special bond even if I can’t always understand what he’s saying. He will repeat for me as often as necessary. Another thing that helps me with him is I decided to make him my ally by teaching him a little sign language. It’s helps! If you have instant Netflix, look up Signing Times. There’s several episodes which is geared for kids and beginning sign language. I think it’s a good, slow, easy pace for adults to learn too. Every little bit helps making conversation flow a little easier.
      And finally I have not always coped well with my hearing loss. Each time I had a drop in hearing I had to readjust, find new ways and that is so frustrating. While trying to figure out how to do things in a different way again, I cried a lot. My last big drop was about 7 years ago and when I was 41 yrs old I came home from very difficult days, running through the house to throw myself on the bed for a good cry. It’s not easy and it takes time to move through that grief to make another start. It sucks. I thought I’d keep losing my hearing a little at a time too and figured I’d be deaf by 50 but I’m not. In that last 7 years it’s held steady and I hope continues to do so. I can still feel my pain from those days like it was yesterday. Transitions are so damn hard but it helps to have a good support group somewhere and that takes us back to the support groups for hearing loss. Look up The Hearing Loss Association of America (HLAA) for local support http://www.hearingloss.org. Check out The Associations of Late-Deafened Adults (ALDA) who may also have a local support group http://www.alda.org. Then there’s the SayWhatClub (SWC) if none of those are available in your area. I listed their website above so here’s their FB page: https://www.facebook.com/groups/SWCFriends/ You will have to ask to join and sometimes it’s a few days before someone can admit you in but hang in there.

      I hope that helps. I’m so sorry to be delayed with my response but I knew I’d type a lot and finger pecking all that on my phone didn’t sound good at all.

  29. Im 71 with 30 percent hearing in left ear. I hear 50 percent in right ear. They both ring so so bad 24/7. I now startel so easy! Got new Oticon aids for $7,300.00. They do work well. I’d be lost without them.

    • Tinnitus can be hard to take. Oticon is a good brand and happy to hear they are helping you. I don’t wear mine all the time but I can’t imagine life without them either.

  30. Same thing has happened to me. In November my right side went, then five months later my left side went… The doctors kept giving me antibiotics. Instead of steroids. So my right one there is no hope for. My left one is 20% under speech recognition. It’s been 7 months now. And boy has it been challenging. Some days, I wrestle w/ feeling like I am just a burden to my family and they would be better off without me. I think the hardest part is feeling left out of everything. My children singing, Music, TV, easy going conversations where someone does have to talk to me ( looking at me …slow… And loud…)like I’m a freaking idiot!
    I used to be very social and outgoing. But now I dread everything accept being alone… phone conversations…parties…restaurants.
    I am 34 years old with a 4 and 6 year old. I feel like I died, and woke up a different person. At my son’s baseball game I hear…” Get the chicken”, instead of ” proper position “.
    Tinnitus and roaring are the norm now. Whatever…I don’t wanna go on…Its just crazy how much I took for granted the little normal things… I wish I had an annonomous friend to talk to…Some days are just so hard. I know people are getting sick of this, I know I am……

    • Sudden hearing loss is very hard to deal with, such an abrupt change! I’m so sorry to hear it’s happened to you. It changes a lot of things. I think at first we all rely on family to help us through it and it’s good if you have that support. There are always things in life to challenge us and the thing is to to keep pushing forward as much as possible. You can be social and outgoing again but it will be in a different way and possibly with new friends. Because of my hearing loss I’ve lost some friends (I couldn’t talk on the phone anymore and they didn’t want to email or text) but I’ve also made some really neat friends through hearing loss.
      There is a grieving process for what you lost which feels like a big chunk of your life. Work through it, there will be light again. Sometimes we have to crawl into our hole and wallow around for awhile before we can pull ourselves up again and forge on, it’s allowed. It’s part of the un-fun healing process.
      When you feel like it, go out and seek support. Find a local Hearing Loss Association chapter, an Association of Late-Deafened Adults chapter or join the SayWhatClub on one of their email lists or their closed group. Being around other people with hearing loss will help you through the dark period. See too if your state as a Deaf and Hard of Center and see what kind of resources they have available. (I think all states have one but some are better than others.) Our state center offers free classes on sigh language, speech reading and coping with hearing loss classes.
      I withdrew after a big drop in hearing about 7 years ago. It took me two years to pull out of it and figure out to get around on my own again. I joined the SWC and started going to my local HLAA meetings. I listened to others and they coped with it all and borrowed their courage too. Little by little I became outgoing and social again and I can tackle most events now thanks to learning advocacy from others. It wasn’t over night, it’s a slow process but looking back I’m glad I did what I did because I do so much now with more confidence and you can too if you hang in there.
      Tinnitus is a monster and I feel for those who hear the roar. I have 24/7 crickets, cicadas and a high pitched whine. It’s the worst when I’m tired so sleep is important. I remember sleep being hard to come by at first and being a walking zombie. Bad days. I worked through them too even though I wanted to die back then. I still have it and I hear it but it doesn’t rule my every waking minute anymore. Keep plugging along the best you can and things will get easier. Be determined to be more than your hearing loss and tinnitus. If you could use a little email support, let me know.

  31. I have a same problem like u ..it is so difficult to understand what people talking wid me r saying ,even in classroom I can’t get what teacher is saying when he gives note .I can hear but couldn’t understand ..

    • Do you have hearing aids? An FM system might help. If that doesn’t work the school must provide captioning under the ADA but you might have to push to get the accommodation as they probably won’t like the idea. Note passing at school from a teacher is NOT a reasonable accommodation.

  32. Hello Chelle…I must say that this blog is the Most comforting article I have noted in all my 50+yrs of ‘Hearing Impairment’. I note that You (personally) don’t choose too indentify w/ ‘that’ term nor ‘Handicapped’ as well. I must say that I envy your outlook, however I question others input too you belief in that I (myself) have always regarded it as a significant ‘Handicap’ with reference to my professional career, And…my personal dealings the older i’ve become. I have always Tried too be positive minded but that has been a challenge in itself. I am now 71yrs old and see (hear) myself being ‘Deaf’ in the too-near future. Unfortunately, I ‘see’ myself as an Angry individual as to the ‘Why me’ senerio and I have choosen too turn that around while I still have time. My Primary goal is to assist others like ourselves an opportunity simplify their lives without having too ‘apologize’ virtually every day of their lives as I/we have. I believe I have found a way to help bring Hearing issues ‘out of the closet’ (so to speak) with a bit of Levity included. Stay tuned, and Thank You.

    • That’s great, I’m so glad you too will help others with hearing loss. This has been a part of my personal therapy with hearing loss. It helped give me a bigger picture and to heal up a few old wounds.
      It’s important to note I’m not always positive minded. Sometimes I get angry too and other times I’m so upset I have to cry it out. Generally speaking I’m doing really at the moment. For the first time my hearing hasn’t declined in about 7 yrs so routines are set and I know what to expect and what to do. When/if my hearing decides to drop again, you may see another part of me!

  33. Hi Chele and everybody else. ☺️ I’m very new to this whole thing and this is the first time to try reaching out to anyone. I’m 37 years old and I think I’ve gotten to the point where I’m gonna have to start accepting things. I’ve taken an online hearing test and it says I have loss in both ears (high frequency) but my right ear is way worse. I don’t really know what the diagram means since its measured by “good” or “bad” instead of decibels. But it labels the frequency levels. My right ear is all on the bad side and left starts out great and drops from there. Hope that makes sense. My sister went with me to an audiologist about 5 years ago after 3 separate people told me I needed to get my hearing tested and he said I was fine. I was just so embarrassed so I just thanked him and ignored it all after that. I believed I was fine and maybe I just had a hard time paying attention. Well, here I am, 5 years later and I can’t hear people on my right side, my left side is the good side. I seem to understand most things at home but if I’m out in public people have to repeat things a lot. It’s so embarrassing. The main reason I’m reaching out now is because I’m working in Cancun this weekend (I’m a makeup artist and the bride and groom flew me here for the wedding) and we’ve all been hanging out at different restaurants and bars and outdoor areas and went to bed mortified. I’m pretty sure everyone figured out something is wrong. The groom looked at me at one point and said “you have no idea what I’m saying do you”. Ugh! I’m doing the brides makeup today for the rehearsal dinner and I’m considering telling her. No bride wants to hear this from someone who is working for her on her wedding day! Lol I seem to find an excuse to not tell anyone ever though. My boyfriend knows and my sister knows. My boyfriend is sad I’m going through it and I don’t think he really knows what to do. He’s so sweet about helping me, thank god. My sister thinks it’s amusing, she’s showing signs of losing her hearing too so I think she’s just trying to lighten the mood. Our aunt has worn hearing aids for years and we’ve always wondered if our mom has struggled with it because she’s so loud she scares people away. And she says what a lot. Anyway, sorry for the long story. I googled hiding hearing loss and found this very comforting blog site and wanted to join. I think I’m just trying to figure out how to tell people so they stop looking at me weird. So nice to meet you guys. 😊

    • I’m sorry I haven’t replied before now, this past 3 weeks have been jam packed and I’ve had little ‘me’ time.
      Your story sounds similar to my story-only later in life. I started having a hard time hearing when I was 14 yes old but only in certain situations; in cars and noisy settings. I went to get tested when I got tinnitus at 18 and they told me my hearing was normal. I was so mad I didn’t get my hearing tested for 5 years and by then it was most definitely a documented hearing loss. I wonder about getting hearing tests in sound proof booths, it’s not real world.
      It’s hard to be upfront about hearing loss at first but it’s the best thing you can do otherwise people think we aren’t paying attention or dim witted. I’d rather be known for hearing loss. Explaining high frequency hearing loss is tricky because we can hear but at the same time not be able to make sense of what we hear. Read up about it as much as possible to make yourself knowledgable. After the first 10 times or so of educating people about your hearing loss it’s a lot easier to spit it out in a nonchalant kind of way. I hope you were able to tell the bride. Again, I’m so sorry for being late in replying as this was a significant life event for you.

  34. Hello Amber…Trust me, I read you Loud and Clear!! Just a tad about myself and some (hopefully) positive advise for you. I am 71yrs old and I believe I’ve been Hearing Impaired from ‘Day 1’ of which led me to be a ‘slow-learner’, now referred to as ‘Learning Disability’. I don’t know if ‘this’ has, or had any affect on my ‘IQ’ as I thing I did fairly well I my professional career and am now retired. My hearing took a major down-turn when I was in the military in a ‘Tank/Armor’ MOS as I found many years later that I had Micro fractures in my right ear but it was far to late too address it. Long story short, I have always tried to conceal the FACT that I was/am hearing impaired and more than anything….I Now know that it WAS Only because I viewed it as a ‘weakness’ to my inner-self. My hearing has now degradated to only about 30-40% remaining in my left ear. I tried Hearing-Aids about 14yrs ago and it was a TERRIBLE & Wasteful experience and really soured my outlook until about a year ago when I had NO other choice. Even now that I have invested (I use the term lightly) in the Best technology available, I am still very disappointed in their worth. Here is my ‘Break-Thru’ advice! Do to the FACT that there is NO Help ‘out there’ for the Hearing Impaired (Deaf yes… Us No) like you and I, our best chances in dealing with it is too allow yourself too let/make it be known and QUIT trying to cover it up as it will Only become MUCH harder too deal with. The reality is (will be) that your Friends and Relatives will be Relieved in knowing of your ‘HANDICAP’, of while we get NO credits for! Actually…Humor it in a way! Without going into further Down-sides in the subject, take a look at ‘HI Please Speak Up’ on Facebook and you’ll see where I am heading. People with ‘Good Hearing’ have “NO” idea of what we face everyday of Our life’s and ‘Really’ all We ask for is a ‘Little’ understanding!! Good Luck

  35. Thanks Hal 🙂

    I ended up not telling the bride, our room was pretty “echoey” but I was able to maintain conversation well enough to not say anything. I was expected to stay for the wedding and reception and after-party so I ended up telling one person that felt safe and I think she leaked it. Everyone that seemed awkward with me the past couple days were all of a sudden super nice with me and I could all of a sudden hear them when they spoke to me, if I couldn’t they repeated themselves generously without any weirdness. It was much easier but at the same time it was hard for me because I felt “different”. I don’t like to stick out. Ever. But honestly, it was nice being able to be a part of things…. I’m gonna have to think on this one…. Not much I can do about it all but still, I think it’s just a heavy process right now. Thanks for your input, Hal. 🙂

  36. Hi Amber….It delights me to ‘hear’ that of you as it gives Me a Feel Good feeling. I WANT to tell you though (for Your Benefit) that YOU/We Are indeed ‘Different’! DON’T be afraid of that Fact. You Will find support in that belief as time goes by. Please feel free too contact me at if I can be of more assistance to you and Thank You too! Regards, Hal

  37. Hi,

    My husband is 28 and has the same condition as yourself.
    Until I forced a hearing screening, I was frustrated and felt ignored. Now that we know what his diagnosis is, we can move forward.
    Until we are able to afford a hearing aid, I need to be the best help and support I can be.
    Please help me with tips that can make this easier for him to deal with. He is a lawyer and is a very strong man but I know that this is breaking him.

    Thank you for your post, your insight and honesty.

    Kind regards,
    South Africa
    +27 72 523 9297

  38. Hello Tammy…Trust me, there is NO soft-shoe routine in being Hearing Impaired. One thing is a key point in your story here, and that is you say ‘he’ is a ‘very strong man’! FYI….I ‘Was’ and ‘Still’ am as well, but that worked against me for Many years as Vanity and Denial are nasty ingredients in our make up. I have all ways had to go the course alone but he has You too help and the Best you can do is ‘try’ too Understand his dilemma. In Not choosing to generalize Your/Hubbie’s case ‘here’, I welcome you too contact me via em at captcaz@yahoo.com or on FB as ‘HI Please Speak Up’ and maybe I can be of more assistance. Good Luck

  39. Hi I lost my hearing over a 10+ year period of time. Currently my right ear is 100% gone and my left ear is 50% and getting worse. I’ve had tinnitus for years and and at times the tinnitus gets so loud I can barely hear with the little hearing I have left. I’ve also had sporadic episodes of dizziness, severe nausea and having the room spinning so fast that I can’t stand up and must find a chair or I will fall over. The doctors, ENT’s I’ve seen don’t know how to help me with these conditions. One doctor diagnosed my condition as Ménière’s disease which is really scary.
    But even with all of this the worse part is when others start acting towards me as if I am crazy or treating me disrespectfully. It really hurts to be treated this way. It seems no matter how much I try to explain to others that my inability to understand what they are saying is because my hearing can’t distinguish some words. For me, this is worse than the hearing loss.

    • I feel for you. Dizziness is the most awful thing.
      Disrespect. Some people are better than others. It’s hard but I recommend you try to weed out the disrespectful ones as much as possible or work around them. Usually when people are disrespectful time I explain my situation and try to educate them. That’s why it’s important to be knowledgeable about your hearing loss.

  40. Hi , I’m new to this! I recently starting really losing my hearing, it’s getting worse and worse. having tinnitus in my left ears closed to a month now as the days and weeks go by it seems more and more of my hearing is disappear, when I talked I can barely hear myself. I’m going to the ENT today to find out what is happening to me . I’m really anxiety and depression right now. But, I know what is going on in just hate to admit. I’m really looking for support and advice in dealing with my hearing loss and tinnitus can anyone help me. Hate having to wear hearing aids

  41. Hi Chelle and all others out there
    Chelle thanks for writing this great blog which has indeed also paved a platform to share our hearing loss experience.
    I would like to share my experience too…
    I am Gayathri, a 27 years old PhD student studying in India. I have a 100% hearing loss in my left ear mentioned in my diagnostic report as ” a dead left ear”.
    The first feeling of a hearing incapability came to me when I was 7 years old. As I could recall, it was in the winter season. The ear gets blocked in winter for most people and will be alright after sometime. I thought it to be the same and didn’t tell to my parents, thinking they would scold me for not wearing a muffler. Then I almost forgot about the thing and more precisely can’t recall what followed.
    It was later when I turned 10, that I started having the feeling that I am unable to hear with my left ear. When my friends used to come and say some secrets in my left ear I was not able to hear and used to ask them to repeat in my right ear. I was also unable to hear the conversations in phone with my left ear and always used my right ear to hear them. Since I was old enough to make my parents understand my situation I presented it to them and they took me to an ENT specialist. The ENT specialist without much discussion of the situation, diagnosed it as a wax block problem and cleaned the ear by flushing water with pressure into my ear ( the method which I am unaware till date of being used anywhere else for removing ear wax). Though I complained to him that still I am unable to hear, he said that I will be fine once the water completely gets out of my ear.
    My father who took me to the doctor was feeling happy with assurance of the Doctor that his daughter is fine. But at that stage I started feeling frustrated that nobody is understanding my state.
    Years passed and the hearing loss became a part and parcel of my life. I found it as a problem only when there used to be some mumbling and secret telling from my friends. As you said Chelle, I also used to do a lot of faking that I heard most part of the conversation. Whenever I used to receive a telephone call, the receiver used to directly go to my good ear. It was like a programmed process and never had to force that to happen. When walking with my friends I preferred to walk in the extreme left so that everyone would be on my right side. Thus I made it to the best to see that I positioned myself in a way I feel least uncomfortable in hearing. And the most interesting part was while I did all this, people rarely noticed. Thus I was getting accustomed and adapted to my situation.
    when I turned 13 years, my parents got their job transfer to a new place . I joined a new school. In the school, one day I got a severe headache and my father came to take me home from school. On the way he took me to one Doctor whom he knew there, who also happened to be a good ENT specialist. The Doctor diagnosed that I was suffering from mild Migraine and give me some tablets. Since he was a ENT specialist, a known person to me,like a family friend, with my father’s permission I discussed with him my hearing problem. He diagnosed and referred me to another ENT specialist. My parents were worried that again some investigation in the closed case is going to happen and wanted everything to be fine. But with all might they took me to the new Doctor,. There, after all the audio-gram, MRI scan and other tests it was confirmed that ” I have a dead left ear”. I saw my mother crying in front of the Doctor and my father asking the Doctor whether this could have been avoided if diagnosed earlier. But he dismissed his query with a big No. Moreover he said that since it is a 100% loss, the use of a hearing aid is also not possible. Though all this commotion was happening on one side, I was having a mixed emotion, sad that I have a dead ear, something which is not normal, and happy that finally to whomever I have complained about a hearing problem cannot dismiss my case as before, cause I now had a tested report to support my argument.
    Years passed, I never felt any problem living with my ears. Only I felt irritated when somebody used to talk to me when I am on a call, or when I am unable to locate from where my cell phone is ringing.
    Most of the people who are part of my life and with whom I have to deal with on everyday basis know about my situation and this makes it easy for me to live a very normal life. In fact many of my close friends have now learned to position themselves so that there won’t be any chance for me to lose even the minutest detail of our discussions.
    Not that there has never been a bad part or when I haven’t felt low. Recently one of the arranged marriage proposal (arranged marriages happens mostly in India) was turned down when I revealed the guy about my hearing condition. Though he said he didn’t felt anything of that sort till I told him, but may be later a discussion with his family made him feel it is best to drop the proposal. Though I felt little bad but it was soon over.
    I think his family might be thinking it as a genetic disorder or something which may affect the generations to come.
    I just want to say that, God (as I am a believer) has given us (humans :)) the ability to adapt to situations. These kind of losses must just be considered as a situation where we need to adapt. No thing is useful unless its use is known. As for me, the use of my left ear was unknown from long time back. So its almost like a not useful thing whose absence is not going to bring any difference in my life. So don’t worry if any of you have any such situation treat it if treatments are available and get out of it and if treatment is not available just adapt to condition. Moreover there is no harm in telling about your situation to the people whom you have to deal with everyday and whom you know well, . Its not to get their sympathy, but to make them understand and help us deal the situation smoothly. Don’t make such conditions rule your life.
    I know my comment is long but if it benefits you, the credit goes to Chelle. 🙂
    Have a happy life

    • Hi
      My son was diagnosed with a moderate to severe high frequency hearing loss 1 year ago at the age of 10. Since then he was fitted with hearing aids and wears them consistently. My husband also suffers from this hearing loss just a little more progressed.
      I think my son was born with this but not to severe and its progressed to his level over his 10 years as he speaks well but from 4 years of age i noticed he hated big crowds, sirens and going to the movies never happened. He would cry and tell me its to loud and was just bored he couldn’t hear the speech well enough to understand what was going on, all things i realise now why! but when he was smaller i just didn’t understand whyhe was so sensitive to these things.
      Having the dygnosis now we feel relieved and i am so glad i removed him from all situation he was uncomfortable with and guided him through as best i could even though other mothers used to tell me he needed to toughen up and i was babying him. I could tell there was something but i didn’t know exactly what it could be.
      Going forward i am teaching him to advocate for himself which he does quite well but he does have a down day where life is just to hard and he needs to cry and scream and tell me all his emotions. He is always tired after a long day at school and is struggling to keep up in school as teaching people and educating them how to help him is a long road.
      He has 2 extra breaks throughout the day as he finds this helps him to focus better in the afternoon classes but confesses daily to me how hard it is to keep up in class and understand what is happening when things change. He doesn’t get any extra help as he doesn’t qualify for it but sometimes i wish i could just have him at home and teach his lessons he is just too tired after school for any extra work. He can be in bed at 5pm sometimes.
      I research daily on his hearing loss and how best to help him. I find because of his hearing loss he has developed such a special qualities like more tolerants for other kids and caring for anybody elses difference.
      Thanks for putting your story out there as he helps people like me get more insight into hearing loss.
      Cheers Cassandra

      • Thank you. Hearing all day is exhausting! It’s a lot of mental work to continually fill in the missing gaps for hours. He absolutely should qualify for extra help such as using assistive listening devices (ALD) at the very least. Push that school to do the right thing! Having an FM system would help lighten some of the mental activity, helping him to be a little tired.
        My middle son has an auditory processing disorder and when one school refused to give him the extra help he needed (he was 2 1/2 grade levels behind and still didn’t ‘qualify’), I took him out and homeschooled him. A few years later we moved out of state and the school system there agreed to give him the extra help needed. Through my homeschooling I caught him up a grade and a 1/2 so it was all good. By high school he was mainstreamed fully again.
        Other people were against me homeschooling him (he needs to learn to deal with it) but 10+ years later I’m glad I did and no regrets at all. I might have regretted it if instead I left him alone to sink or swim! So keep on following your instinct and don’t listen to others. You are right on. Now see if you can get that school to comply with an ALD.

    • You are awesome! I admire your self confidence through it all. The good people will stay in your life and those who aren’t able to deal with it should fall to the side. No sense in living with extra anguish.

    • Gayathri–It’s great to read this because I have a very similar history. I have moderately severe loss in my right ear and severe in my left. It happened to me when I was 14–probably a virus. I hid it at first (even cheating on my hearing test at school) because I was scared of needing hearing aids. After that, though, I tried telling my parents and doctors, and everyone sort of shrugged it off because I seemed to be doing well. I can’t really blame them either, since I myself didn’t think that it was all *that* serious until I got my hearing tested at the age of 34. I’m a college professor now. I was successful in school and had a healthy social life despite the extra challenges presented by my hearing loss. I think that hearing loss affects people differently, and I was really lucky to be able to adapt in the ways that I did. Now, as an adult, I am thrilled to have things like hearing aids and classrooms with hanging microphones to help me out…because after years of compensating, I am TIRED! I think that the most important piece is just being able to explain the hearing loss in those moments when I need someone to turn down the radio, let me sit in the corner, move closer, speak more slowly, write something down instead of whispering it, text me instead of calling, etc.

      Anyway, it’s nice to read a note from someone like you who also adapted without even really thinking about it. Since I’ve learned about the extent of my hearing loss, I’ve sometimes felt like a liar who kept a strange secret for two decades…but I realize that I wasn’t faking; I was adapting. Of course, I’d never ever advise someone to go without help if it were available to him/her. It’s always better to ask for accommodations when you can because looking out for yourself is a vital life skill. For that, I really applaud you, Cassandra and Chelle, for sticking up for your kids. For those of us who didn’t have that option for whatever reason, it is good to know that we’re not “crazy.” We’re just creative survivors!

  42. Yes i also get silly comments from people like just get on with it he’ll be fine but the truth is he can’t catch up with no help and just keeps getting left behind.
    On a positive note my son is involved in a lot of deaf and hard of hearing camps and activites that he is now wanting to learn sign to help comunicate with other kids that need some support.
    I haf a question to ask you about going forward with my son he is quite anxious in nig crowded environments with lous music. He askes to leave any place like that and hates lous.music when people are partying he says he cant tell whats going on and understand enough that he just feels worried the hole time. How can i support him through this. At the moment we just leave places ge is uncomfortable after a little while and he’s all good. Even at home with noisy parties else where he freaks out and cant sleep untill i lay with him. He told me he doesn’t want to feel like this but he just hears the beat of the music and yelling and shouting (talking) but to him its so scary. I ensure him he is safe and we support him in all ways but i just wish i could help relieve his anxiety.

    • Being involved with others who have hearing loss is a great help, good job! It makes us feel less alone with all the struggles.
      Large groups to hearing loss and those who wear hearing aids is a sea of noise and a lot of time we can’t pull what we want to hear from it. Noise can render me completely deaf. Quite honestly, I do not wear my hearing aids in noisy environments. Last night we went to a restaurant with horrible acoustics. I started out wearing my hearing aids but the noise was so overwhelming I could not concentrate on my husband. I took my hearing aids off and the world muted and I could concentrate on Ken again. Although I’ve worn hearing aids for 25 years, I never learned to ‘filter’ out loud background noise with hearing aids in. I just can’t stand it.
      Does your son have this problem without wearing his hearing aids? If so, he might have hyperacusis, extreme sensitivity to noise. Hearing aids seem to compound this and can be painful.
      I’m not sure how to relieve his anxiety about the noise. I wonder if during those times, some soft environment music through earbuds (which tend to block out other noise but you don’t want it to be too loud either) would help??? That is if he can hear well enough without hearing aids. Or using a neckloop with the t-coil program through his hearing aids would also do the same thing and better than earbuds. How about a visual distraction such as those things that project images on ceilings??? I would think letting him know you believe him is a comfort. I wish I had something more I could tell you and help you with but I’m not sure. 😦

  43. Yours is the first blog I’ve read. I guess it never occurred to me that someone knew exactly how I feel. Thank you. I’ve always been nearly deaf in one ear (90 db HL) I don’t remember any age of not being aware I could hear nearly nothing with that ear. Then earlier this year I woke up one morning with a huge drop in my hearing in the other ear (I’d had some hearing loss, not much 35 db HL) Apparently, my Eustachian tube had quit on me. I’ve always had holes in my eardrums and trouble with lots of infections and Eustachian tube trouble. I’ve had three ear surgeries this year and my hearing is simply getting worse. My ear guy says I can use hearing aides, but since my hearing is both sensorineural and conductive (emphasis on sensorineural) and I’m waiting to completely finish healing from the surgeries, I have been waiting with mixed emotions. This is not a matter of being able to hear “better”… I just want to hear, anything! I’ve discovered so many changes in my personality it’s scary. I avoid conversations because it’s just too much work to strain to listen. I’m still offended by people waving me away when I say “excuse me.” I get cranky when I have to remind people over and over to not turn away when they are talking to me. I am completely unable to talk on the phone, hear a television or participate in a group conversation and it’s only been 6 months that I consider myself nearly deaf…My latest surgery appears to have made my hearing worse (doctor warned me it was possible…but I had mastoiditis in both ears, large holes in both ears and lots of scar tissue…So surgery was necessary.) My last hearing test before my most recent surgery was just about equal hearing loss now in both ears. It’s never occurred to me though that hearing aids might not work for me. I feel better knowing other people know exactly what I feel, what I’m thinking. I want to thank you so much for putting it out there. Rhonda

    • You’ve been through a lot this year. I’ve talked to 3 people who had hearing loss only in one ear and were coping well with it…until the other ear dropped and then they panicked. It changes everything and it’s learning all over again how to cope, how to make it all work for you again. I think there’s a healing period where we withdraw until we can figure out how to do it all again. I did that for two years after the last big drop in hearing for me, so many painful events.
      Never mind puts me through the roof. It’s my pet peeve and I will react, probably not in the nicest way either but I think that flipping out once in a while makes an impression. lol Most of the time I try to be nice and explain how I hear and why. That’s done the most good for me in my family life and with friends.
      I think hearing aids will help you when you are done healing up. They give me 35% more than without. Hearing aids work well on people with a conductive loss from what I understand…it’s just getting the noise back there.

  44. Hi guys am facing the same hearing problem. As i read the blog, I thought someone ia writing about me.

    At the age of 15 I started to notice the same thing, and have started to use Hearing Aid regulary now 1 year back.

    Am currently using the IIC hearing Aid. I can hear people when there are less noises. However Phone calling just mess me up. I lost my job, as i was not able to communicate on phone calls.

    Can any one suggest me any thing.
    How to cope up with this curse, that god have given to me. Always had to stay away from people, Was unable to make friends as feared they will know about my Hearing..

    My questions for you or God.
    1) why he gives this Hearing loss things
    2) Why their is no technology to completely make me normal.
    3) Why why? Just why
    Email me on:-
    Would like to hear from you.

    • Have you tried a caption phone? That might have saved my hairdressing job 8 years ago. I still hate the phone myself but I can use it with either CaptionCall available at work and I use ClearCaptions on the Internet at home since I don’t have a landline.
      The more you can learn about assistive listening devices and technology available us, the more confident you will become. Nothing will make us ‘normal’ again and to be honest, I wouldn’t trade my life for anything right now. Because of hearing loss I have met some of the best people in the world. Because of hearing loss, I’ve had some real downs too but looking back they were learning experiences. I didn’t let it stop me. I found my way around. I admit about 7 years ago I was feeling very low, so low I withdrew for about two years. Those two years were quiet for me but I used it as healing time. I used it for educating myself and surrounding myself with others who had hearing loss too. They gave me light again and I’ve learned more than ever.
      It’s ‘normal’ to be pissed off. It’s normal to be hurt and normal to question “Why!?” I’ve been through it all too. The key is not to give up. Swear to yourself you are going to live a full life in spite of it.

  45. Thanks for the reply, I was looking for the people with same problem here in Auckland, Nz.

  46. My audiologist told me the another day that HA’s are optional for me. My hearing loss is between 35-40 db in both hears. Also, I have auditory Processing disorder. I passed the word recognition in normal conversation level. What should I do? Thanks jt

    • My middle son has an auditory processing disorder. What I learned from that his learning/coping style is visual, not auditory. More and more people are visual learners. Do an internet search on ‘visual learning style’. Even if you aren’t a student it should give you coping strategies. I’m not too sure hearing aids will help but I’m no expert in that area.

  47. David \Fletcher

    could someone please tell me why people that you know and love
    after years of bening together one does not understand my deafness

    one please

    • If they don’t mind reading, try the book Missing Words by Kay Thomsett and Eve Nickerson. You could try an online hearing loss simulation, here’s one http://www.starkey.com/hearing-loss-simulator but there are more. Another good one that went around for a while used the Flintstones and here’s that link: https://www.youtube.com/watch?v=TD5E88fFnxE. If you have a high frequency hearing loss then you are missing consonants and speech banana audiogram will show them exactly what consonants you are missing and here’s a good link for that (scroll down): http://www.earsandhearinguk.com/deafness/types-of-deafness/ Once I describe how I hear, that seems to help. Conversations have ‘holes’ all over the place with sounds I can’t hear. I’m profoundly deaf where the letters K, S, F and TH show up. I’ll never hear them even with my hearing aids. I have a severe hearing loss where the letters P, H, G, SH and CH which probably I miss most of the time. I can make up a sentence and show people exactly how I hear…
      –e -ell- -ea–ell-s by -a- -ea–or.
      Anyone want to take a stab at that? Filling in the blanks for long amounts of time is exhausting. Fortunately I can lipread a little and that helps fill in the gaps but that’s only face to face. Forget it from another room.
      Anyway, a lot of times describing how we hear will help the other person understand better. Unfortunately there are some who never get it and I’m not sure how to make things work with a significant other that way except maybe some counseling. 😦

      My sentence was “She sells seashells by the seashore.”

  48. Hello,

    I have the same problem as you described. I noticed my hearing loss at the age of 12. I can hear fault well when people talk to me face to face. However, I find it an everyday struggle when they don’t. After so many years,I started wearing hearing aids last year. I am 24 now and it doesn’t seem to help much. The background noise is driving me crazy and I can’t hear what people say when too many people are talking at once. I am feeling depressed about it very often. Ow since I am getting older.I was looking for someone who has gone thru the same experience as I am going through and I found this article. Any suggestions you would give me to make my hearing better and my quality of life better? Also, I have learned to be pretend to understand things that I fo t hear, which is really a bad thing.


    Your hard of hearing friend.

    • Over the years my lipreading skills have improved which helps me in noisy background environments. I will try dealing with noise by going into my ‘comfort’ program. It’s a special program I have where it drops the noise level down and goes into extreme focus forward. If I find myself clenching my teeth trying to deal with the noise even then, I will take my hearing aids out and put them away. Like you, I’m good face to face. That’s in extreme noise situations like a bad acoustic design restaurant, a bar or whatever large gathering.
      If it’s any background noise at all bothering you then my advice to you is to ask your audiologist to lower the volume on your hearing aids. He/she may have set you too high to begin with and you need some adaption time. Try a special program like I have and keep it close to the main/master program for a quick switch when needed. I noticed it helps me in places with bad reverberation too. If you can, be specific as to exactly what background noise is bothering you when going in for a tweak. Is is fans/refrigerators/etc or is it people talking? That helps the audiologist to know which frequencies to tweak.
      I would say after a year you should be used to noise with hearing aids so maybe it’s not programmed for you correctly. You’re the boss, make the audiologist make it right or at least tolerable. I once told my audi I hated the whole thing and couldn’t be specific. He scrapped the program and started all over again. They really don’t us to ‘hate’ our hearing aids.

  49. I am wondering why such hearing problem in this world. Really why????
    Make compelte deaf, that could have been better option. rather than half.

    What are our future.
    Is anyone from Auckland having same problem. 02102608222.

    • Being between the worlds sucks and sometimes leaves us undefined in standard society. There have been times in my life where I felt stuck there and hated it with a passion.

  50. Pingback: Living With High Frequency Hearing Loss | Industrial Hearing Loss

  51. Bella Miranda

    This is an awesome article, you said it all about what affected me, although am not able to afford for hearing aid, I feel bad of thing mostly when people repeat word to me more than five time yet I can’t figure out what exactly the mean.. I feel embarrassed and I can’t make a better relationship with a guy simple because of being scare of embarrassing of impaired hearing… I was not born with it, I just discovered it at age of 11 and I alway feel bad with it mostly in school when I can’t pick up a teaching from my lectures.. Just really dnt know what to do! It really hurt and embarrassing..

    • Even without hearing aids you could benefit from an FM system at school, you would just use headphones instead. Find out if the school has one available. If not, talk to the student services or disability services, they have to accommodate you. You may not want to stand out using one but act like you own it (the experience) and you will gain confidence using it. Understanding in class is more important than anything else.
      I’m not sure how you ask for repeats but a better strategy after the second repeat would be to ask for a rephrase, “Please say that in another way, I’m stuck and can’t figure it out.”
      Ask the people you are friends with to learn finger spelling. When I”m stuck on a word, my husband and some of my friends will finger spell the first couple of letters for me and then I have it. They don’t have to spell the whole word.
      If all else fails, you can have them write it down. I used my phone to write something down for another friend because she couldn’t get what I was talking about. People could even draw the letters in the air helping you along.
      I recently ran across the quote, “The dsiability is not the problem. The accessibility is the problem,” by Mohamed Jemni. We have a different way of communicating is all and we have to educate others about it. All the time. But hearing loss is becoming more common so I think it will get easier to be hard of hearing.
      I suggest getting the book, “Speechreading: A Way to Improve Understanding” by Harriet Kaplan, Carol Garretson and Scott Bally. It’s not really so much about understanding the sounds of speech as it is practical hearing loss. There’s all kinds of tips and tricks in that book to getting along as hard of hearing.

  52. Christina Goebel

    HLAA is a great place for support! It sure helps to know you’re not alone!

    • It sure is. I love all the hearing loss organizations. I’ve met some of the best people at conventions and through hearing loss itself.

  53. Jeffrey Secora

    You just discribed me to a tee. I lost my hearing when I was 8 wasn’t told I had a hearing loss until I was 12, I fake hear so well that I get accused of not having a hearing loss at all and I’m told it is just selective. I read lips decently but it is not always perfect. It is near impossible to have a conversation in a large group or with someone more than 3 feet away. I’m also socially stunted meaning when I try to be engaging with new people I’m awkward and well quite frankly unable to meet good solid friends which is my main problem

    • The term “selective hearing” *rolling my eyes* That’s another term I don’t like. I think some of us are so good at faking/lipreading/body language that others forget we are hard of hearing. I bet you are a better lipreader than you let on. They younger people learn the better they are it from what I see.
      Making friends has been easier since I’ve been upfront about my hearing loss. It’s not the first thing I tell people but I usually let them know within 5 or 10 minutes of meetings them, about the time I ask for a repeat. Unless they have something in their mouth or turn away a lot while talking then it’s pretty much right way.
      Large groups is one of the biggest challenges. I think about the situation ahead of time, plan what I need and sometimes decide to skip all together if it’s not going to suit/interest me. If I need accommodations, I know how to ask for them now. It took me a long time to learn how to do that! I’m 48 now so many years. I think the older we get, the crankier we get so we’re less afraid to ask and make things happen.

  54. Jeffrey Secora

    Thank you again. After a lifetime of trying to fit in with no accommodation, I feel like I learning about a whole new world I didn’t know existed. There is not much in my area that I can find or know about but I learning so one step at a time.

    • Try finding your tribe instead. The SayWhatClub, The Association of Late Deafened Adults and The Hearing Loss Association of America all have really great, wonderful people both young and old involved. Try a convention. When you find your tribe, it’s like coming home.

  55. Judy steinkraus

    I just found out I had a hearing loss of at least 50 %of my hearing. Thank goodness I am not working. I am a little scared right now. I will see the doctor tomorrow and learn more about my condition.

    • Good luck tomorrow. It’s good to get checked out and make sure it’s nothing super serous. Hearing loss isn’t the end of the world, it’s just a different way of communicating. I’ll be happy to help on your journey.

  56. Jeffrey Secora

    Don’t be scared I know it can be scary. But lookes how you coped with it so far. You are far stronger than you give yourself credit. Now you are going to be stronger you’ll be gaining more knowledge and they say knowledge is power. Good luck to you

  57. My name is Chelsie and I’m from Nottingham England. I’m 24 years old.. my mother first took me to the doctors In 1993 when I was 1 years old telling them that she knew something wasn’t right as I wasn’t developing like my sister did, I had grommets and they sent me on my way form then I have suffered numerous ear infections in my deaf ear. This has lead me to completely withdraw and shy away from social activities for 24 years. It had a major impact on my school years I just felt like a outsider, I could hear people talking but couldn’t make out what they are saying, so I chose not to go to school anymore, I left with no grades and felt hopeless, from then on just lived in my own head, reading books, playing video games, only having a hand full of friends who understand my situation. I have developed social anxiety and can’t do simple tasks like going to the hair dressers because I’m afraid someone will talk to me and I won’t hear them, i can’t talk to anyone who doesn’t speak with a English accent because I rely on lip reading. I feel so let down by the system and all my doctors. Not to mention living with vertigo and tinitus that drives me up the wall!! After a severe ear infection that led to me to lose the little I had left of hearing in my left ear I was sent to ENT and issues with a hearing aid! And I can’t believe it. I can hear things like water going down a plug hole. Just little things that would make me cry because I’ve never heared them before, then had another set back with yet another infection I had microsuction in my ear and they have found a large cholesteatoma which they think has been growing in there for years, I can’t believe they never spotted it before. If I’d had the treatment sooner and the hearing aids I think I would of lead a normal life I would be at university with all the others and would of made friend to last a life time. It makes me so sad to think there could be children growing up who arnt getting the help and support that they need with deafness. There is help in place for totally deaf people but not for the kids and adults who are struggling with partial deafness.

    • Wow, I’m so sorry to hear you went so long without being diagnosed properly. That’s really sad on the part of all your doctors over the years. Someone should have thought of that!
      I know some about cholesteatoma because my youngest son (now 23) had issues with it. It still pretty much destroyed his eardrum so he can’t hear out of that ear. He can hear with the other ear so he does not want a hearing aid so far. Since it’s an middle ear issue, hearing aids should work pretty good. You just need to get the noise back there.
      It’s never too late to tackle college, I say go for it. It will be a bit harder perhaps but not impossible. Best wishes to you!

  58. Wow, lots of responses. I am also 43, with HI on right side, and deaf (simply put) on left. Been wearing Hearing Aids since about 25, and about 4 years ago my left ear just bottomed out. I have a congenital hearing loss.
    I have heard lots of amazing things about WIDEX hearing aids, not sure if it is the states.

    • We are very similar! My first pair of digital hearing aids were Widex and I loved them! I didn’t see how any hearing aid could top them. The next audi fit me with Phonak Naidas which I also loved. Now I have Siemens which haven’t been my favorite but has given me the best speech discrimination.

  59. I’m in the same boat at 30. I’d really like to talk more.

  60. Hi everyone reading this,
    when i began to read this, i had my mind blown, coz this is same as mine… m now 20 years old…. my hearing aid is currently under maintenance… but i think it usually doesnt help me much… now lets get this clear… what i want to ask is…. i m boy… nd i also like to hang out with girls…. but… due to this it feels so embrassing…. i end up chatting with them… now… i love a girl… nd i do think that she knows my problm… but not completely so do u think that if i proposed her and she said ‘yes'(80% possibility).. then shall i ruin her life.. or smthng like that..??? 😷 i think of it so many times…. or shall i jst not chat with anyone and sit quiet…. i have even met her once… dat time my problm didn’t showed up dat bad… 😅 what should i do? can she just leave me after knowing how worse i m. at conversing?

    • You will not ruin her life! You’ll add a whole dimension to her life so go for it. Show her you are in charge of your hearing loss and not the reverse, your hearing loss is in charge of your life. There are some very good people out there. Give her the chance.

  61. Thank you so much. Your story inspires me and I feel I’m not alone. I’m 50 and I’ve struggled since 21. Today I realized my hearing have declined even more. I was searching and I saw your post. I use hearing aids as well but I lost one of them a year ago. The doctor told me I’ll never go deaf which was a relief for me. I’m about to become a substitute teacher and I’m super nervous not hearing my student or frustrate them by asking to repeat. Any way, thanks again!

    • It’s good to educate young people about hearing loss as you educate them. You’d be doing them a favor. My kids grew up with a hearing loss and we (my family) made sure they respected it. All 3 became wonderful, respectful adults. It’s just another way of doing things is all and it’s better if people don’t become so rigid. Let them know what you need. The confidence will come. I know there are some bad apples but make sure you focus on the good ones.

  62. I have been struggling with hearing loss since my mid 30’s. I am 46. Hearing loss runs in my father’s side. It seemed like his entire family wore hearing aids. My brother had hearing loss since birth. Why my loss did not start until later I do not know but it has become life altering. Like you said the phone has become my enemy. It has caused depression, seclusion and a lot of stress. I would love to find some kind of support group that can relate to these challenges.

    • Try the SayWhatClub. They have both email lists and FB groups depending on your preference. I hated the phone 10 years and many of us are uncomfortable using it so we can empathize! Captioned phones have helped but it’s still not my preferred mode of communication. If you live in a bigger city look for a Hearing Loss Association if America chapter or the Association of Late-Deafened Adults. They have good people too. I found my Hard of hearing role models in support groups who helped build me up into a real person again where before I felt like a shell of person. I have confidence again thanks to all the wonderful Hard of hearing people I know.

  63. Hi Chelle, I came in to your blog because this morning my ear is soared and hurts me. I’m 20 and I experienced hearing loss from two years, I didn’t have enough money when I was in high school to afford hearing aids, but then I started to work and I couldn’t just do it without. So I work for a year to buy them, I was a waitress and my chiefs were annoyed about my problem most of the time. I experience most of the feelings you describe here, the faking, the frustration and especially fear for my future, and a big guilt feeling. I ask you to forgive my writing, but I’m not English. I lived the most of my life in Italy. From last September I moved in Ireland, to work as child minder in a family. I really like this country and how things works here and I’m thinking to stay here more after I finish with this job. But I’m afraid of what job I would be able to do with my hearing problem. Now I have hearing aids but learning and especially understanding a new language, when people talk fast is hard. I’m good at talking and my English is far more better now, but I’m wondering how will I be able to work somewhere else? Anyway reading your blog made me feel less alone, I really thank you for this.

    • You sound absolutely awesome to me. In spite of hearing loss you have learned a new language, moved to another country and worked as a waitress…a very hearing job. You need to give yourself a lot more credit! I am giving you a high 5 from here. I think with the right tools and support you could do almost anything you wanted. Educate yourself about your hearing loss, learn all you can about hearing aids – what they can and can’t do and about all accommodations available to you (captioned phones, FM systems, live captioning, etc) and you could rock this world. Knowledge is power and it will give you confidence.

      That said, I know it can be scary and those holes we drop into because of hearing loss are the pits. I’ve been through depression because of my hearing loss and I look at those times as a sort of healing time. I’m on the other side now so I know it’s possible to break though. If you are on Facebook, try the SayWhatClub’s closed FB group called Gen-Y. You’ll get some support there and a boost.

  64. Hi, I was very interested in your story. I’m 39 years old and struggled with hearing loss at a younger age. Growing up in a very poor family hearing was not something my parents paid attention to. When I became a teenager it was more prevalent. However, but a miracle of God (and I mean literally) I was healed and can hear great! I still struggle with tinnitus, though from time to time. My bestest struggle now is I seemed to have some very important synapse missing from when hearing and brain connections are pairing up as a child. I’m a psychologist now, and married to a professional musician. I’m very sing-songy, but my husband says that I’m consistently .25 of a pitch off. I don’t hear it though. I’ve struggled over the years to be able to hear harmonies, because I can only concentrate on one sound at a time. My very patient husband works with me, but there are time I feel like it’s in vain because I can’t differentiate between going flat or sharp in a pitch. And interestingly there are pitches that literally hurt my hard like someone tapping in my eardrums. I wish there were more resources for people who used to suffer from hearing loss and are now trying to help their brain make up for lost time

    • And spell check is also my bestest struggle too! Lol. Sorry about auto check!

      • You have interesting story, thanks for sharing. Perhaps you have a bit of recruitment? Certain sounds will bother me at times too.

        I have no experience with music except listening and dancing to it for as long as I can remember. I mainly hear the bass so I like music with a good beat. I’ve tried listening to music through my hearing aids via Bluetooth to see if I could get more sounds and I do! However, I’m not used to those sounds in music anymore so it sounds very weird to me.

  65. I am 14 and some of these signs have started happening to me. In fact, they started 1 year ago. I also “bluff” or ask people to repeat themselves because I can’t understand them for some reason. I don’t know what to do.

    • It is so hard as a teenager but I give you credit for recognizing the signs and looking for help as I had no idea until I was about 18. It’s only hindsight that I can spot it now. How are you in quiet situations, are you okay there still? Is it a high frequency hearing loss? How I wish I could wave a wand and change it for you. Go get a hearing test just so you know and then make sure the audiologist explains exactly what that means in the sounds of speech. (High frequency hearing loss means you’ll hear vowels better than consonants, as an example.)
      My hearing loss didn’t become manageable until I started advocating for myself. Getting hearing aids is only about 1/3 of the solution, the rest is becoming knowledgeable in assistive listening devices, the type of hearing loss you have and then advocating for yourself. What do you need to hear better? Tell people to get your attention first then start talking, my friends in high school knew it was next to impossible to just yell my name in the hallways so they would jump up and wave at me so I knew where to go. The next thing they can do is always face you when talking, those two things right there will help a lot. Look around for speechreading articles, youtube videos and that should help too. There’s a great book called Speechreading: A Way to Improve Understanding by Harriet Kaplan, Scott Bally, Carol Garretson. It’s not really about seeing the shapes on lips so much as it is practical strategies for hearing loss, that book helped me a lot.
      I wish you the best. Be a leader and never let your hearing loss make you feel less than. You can get along great in the world, you’ll just have to do things differently. Write anytime.`Chelle

      • Hello and thank you for responding so quickly.
        In quiet situations (sometimes)- it’s like = I can hear them but at the same time I can’t hear them. I don’t know if that makes sense or not, but I can hear vowels more clearly than consonants. When people talk in a ‘quiet voice’ (basically low tone voice), I can hear them better. I grew up with my class being very noisy all the time up to till 7th grade. It was at that time where I noticed that my hearing wasn’t “good”. I’m not sure if it’s natural or if it was caused by my noisy class. I cannot hear high pitches very clearly. (again, I can hear them, but I can’t make out the words – if that makes sense.) A lot of times people have told me I’m going deaf because I simply could not make out what they were saying. Even in this new class that I’m in, it’s very noisy and I’m afraid it’s going to ruin my hearing even more. I’m going to talk to my parents about my hearing loss or problems and consult with an audiologist. Again, thank you for responding and giving me tips. I will ask people for repeats whenever I can’t make out what they’re saying.

      • You probably have a high frequency hearing loss. I have a profound high frequency hearing loss which pretty much means I hear well enough to know someone is talking but not understand what they are saying because I’m missing a number of consonants. I hear machines but I can’t hear birds and cats. I’m deaf in certain frequencies only which is really confusing. Classrooms have notoriously bad acoustics and if it’s noisy enough to be 90 decibels it could be hurting everyone’s hearing. (You can test it with a decibel meter app on your phone.)

        Here’s a conversation with snippet of what something sounds like with a mild high frequency hearing loss which causes us to miss F, S and TH:
        –Many of li_ _ailure are people who did not realize how clo__ __ay were to _ucce__ when __ay gave up.
        –Many of life’s failures are people who did not realize how close they were to success when they gave up.
        The brain is pretty good at filling things in but some words remain hidden. If you can explain that to people, they might be more understanding. The more you can educate people, the better off we’ll all be.

  66. 25 years old and lost hearing a year ago I now wear hearing aids in both ears everything you wrote is basically me right now pretending to hear people when I don’t people asking do I have my ears on …. Some getting frustrated it’s really depressing and I’m still trying to learn to cope with it some days I still cry .

    • I’ve cried a lot off and on over the years. It is super frustrating and can be isolating. Be brave, be upfront about, tell people what you need and learn everything you can about hearing loss, hearing aids and assistive listening devices. It will help build your confidence. Also learn the limitations of hearing aids so you don’t feel the entire burden of communication, it takes BOTH parties to make communication work and they must do their part too.

  67. Im also suffering from hearing loss, and i can feel every line you wrote there. May god bless you sir and bless you with better health like never before

  68. Hi Chelle, I came across this because the doctor that I see had told me I lost “some” ( i’m not sure how much ) hearing in my left ear. I wasn’t sure if I should be concerned or not but I wanted to see what kind of symptoms I guess you could say, other people had. In majority of the conversations that I have with people I have to ask them to repeat themselves or I have to nod and smile because I didn’t hear a word that they said, there are more things that happen but I don’t want to make this too long. I also relate to you when you were talking about the problems you had from age 14-19, but I expiernce that now along with the constant ringing from time to time. I’m only 15 and it’s really bothering me, you probably can’t answer this but it’s worth the shot.. do you think I should be concerned?

    • It’s a tough journey but it can be made easier with support. How about we change “concerned” to “aware”? You are aware of hearing loss it sounds like to me, and you should continue to be aware of it and educate yourself as much as possible. The more you know, the better you will handle it. The more you handle it, the more in charge of it you will be instead hearing loss being in charge of you. Be the boss. Tell people what you need for good communication without making it a big deal (get your attention, face you and talk within 6 feet). Hearing loss feels like the end but it’s only doing things differently, and believe me, everyone is dealing with something.

      Tinnitus is scarier, is that what concerns you most? See a doctor to rule out other medical issues but don’t be surprised if they say nothing is wrong, it’s just one of things. But the constant noise! It’s maddening at first. Eventually your brain will habituate it and it shouldn’t be so terrible.

      Or is it the communication isolation that is worrying you? The thing that helped me most was finding my hearing loss tribe. See if you can find one friend with hearing loss to talk about the frustrations, anxiety and even at times humor of it all. Hearing loss is on the rise so it’s getting easier to find others. Sharing seems to help.

      Feel free to continue the conversation here too. I can talk about hearing loss forever. I’m always checking in.

    • Hi there Aluyah

      I didn’t know had hearing loss til formally diagnosed in early 30s tho had struggled real hard to make stuff out and had been given excuses for it by doctors even tho I said I thought going deaf cos sometimes the head noise so loud and literally would temp go completely deaf. I couldn’t understand and eventually saw fab audiologist who also uses aids like I now do and took me seriously as he has a lot of personal and learned knowledge. I feel for you as in some ways I gradually realised my hearing loss was there and always had been so was no great shock but must must be very worrying to be told you have some loss. You did good thing talking on like a forum as that’s what I have done and it was such a great help to know that the things I struggled with and put up with when growing up is normal with any kinda hearing loss. I guess they must be symptoms so I’ll do best to just say main things for me

      -Even tho could hear (as I thought cos knew no different) I could not very often seem to make out what someone was saying even after I’d asked to repeat a few times so would make excuse and ask to explain.

      – have always had a loud noise going on 24/7. I now know Its tinnitus and is apparently very common with someone who has hearing loss in one or both ears. It can be there all of the time or with some people part of the time.

      -struggling to make out tv and cinema or even the words in a song especially with music playing also. My experience was that it was loud enough but cos other sounds as well as voices I wasn’t able to convert into sense and just sounded like a loud dron and stuff like to sounded worse if put up volume.

      -any changes in perception of sound or volume. I had, and still do, get a sudden change where by the tinnitus plays games and turns up a notch into like a fire siren and my hearing drops. For me this eventually, in minutes but up to few days, returns to my normal. In some cases a change of any kind like this is a symptom of some kind of hearing loss but is sometimes treatable and normal hearing restored. It’s so variable.

      In general (I’m no medic) I think if you do struggle with making stuff out sometimes or have any signs of tinnitus then these things are usual with loss. Also if it’s just one ear affected it may be hard to tell where a voice or sound is coming from. My left ear goes to nothing as the frequency goes up and when did test I thought the sound was Righ next to my other ear when a tuning fork used to identify direction sound was coming from.

      Also you can possibly hear like normal in a quiet place or on 121 but start struggling when say in a shopping mall or in any noisy places. Like it sounds same volume but can’t make out some words or follow what’s bing said properly. Also if you have loss in one ear and someone is talking on the other side it could be difficult as your hearing everything going on on your ok side and that drowns out what someone is saying near the other.

      I don’t know if you have had a full hearing test done by audiologist that would determine any loss and sometimes the cause say for example if it was wax or infection or any physical signs or if you had been exposed to long periods of loud noise etc etc. Sometimes, like for me, it’s impossible to say as it’s always been that way as at low frequencies it’s 45-50 decibels and around 60-70 mid range then one up n one down so not normal for sound induced or age related. Don’t worry too much as there are ways around it to enjoy life the way you want. It seems like a mine field and is very individual and hopefully likemsekf (fingers crossed)! Any loss won’t constantly be deteriorating cos it seems it just depends in one if the many causes or types. Good luck and hope you find some resolution about your concerns.

      • I had a conversation with someone the other day who also has strong tinnitus. We were talking about the hearing test and how it was to tell if we heard a beep or our tinnitus. How do we know when to respond? I answered that I only responded if I knew it was not my tinnitus. Tinnitus gets in the way of hearing often I think. When I’m tired, my tinnitus screams: cicadas, crickets, high pitched squeal all the time but when tired I get an angry chirping bird too. I occasionally get this really low tone that hums for a few minutes and then disappears. I still haven’t figured out the why of that one.

  69. I am only thirteen and I have had a hearing loss since I was a baby. They doctors say that it hasn’t gotten any worse but it cannot maya rly for nd my self asking for repeats in sentences even with my hearing aids on. People often get frustrated with me and they just stop and say “never mind” when I can’t hear them. I have asked my doctors about it and they can’t advis me on anything. And like yours my doctors seem to have given up trying to find the cause of my hearing loss and they won’t even try to find it out. As far as I know all they did was look for typical signs of children going deaf. They didn’t even spend a week looking, so I stopped asking.

    • Sadly a lot of hearing people don’t understand hearing loss. It seems so unfair not to be able to understand what they are saying and then be able to hear those hateful words “never mind.” Those have got to most hurtful words to those of us with hearing loss. It’s like they are dismissing our existence.

      I bet you hear a lot better when people face you. Communication is a two way street, they need to do their part too. Tell them you use lipreading to hear and see if that helps. Tell them they will repeat less if they do that. (I bet you read lips well and don’t know how good you are at it.)

      It’s amazing how terribly doctors deal with hearing loss. They are no help with dealing with it most of the time. At first it was hard on me not knowing why I lost my hearing. Now it doesn’t matter so much the why, knowing how to deal with it better made things easier. It might be nice to know why someday but it won’t change how I live day to day.

      Don’t ever give up advocating for youself, that is the key. Don’t let “never had mind” win.

  70. This article I can definitely relate to this is so me. I do the exact same thing when I can’t hear somebody I just fake it ,and Bluff but it gets me in trouble because I agree just some things that I didn’t even know what I agreed to it’s so frustrating at times

  71. Hi Sofia & everyone responding. I totally agree with becoming aware and and accepting this nuisance thing and with that finding the things/tactics that work best along with a bit of humour. My biggest hurdle was using aids in the company of friends and the inability to tell anyone. Prob through embarrassment and vanity. Now they too accept and yep I get some rib digging but all good cos that’s what friends do along side being very supportive cos we all (hearing or not) have our little quirks. Been weird for me as I wasn’t formally diagnosed with hearing loss until in 30s. Was told that undoubtably it was from birth and described as moderately severe in both he ears I thought my hearing was normal and everyone had swarms of bees in their head but actually I had somehow just slipped the net and somehow got by. My first language is Donald Duck and somehow made sense of it and got by well enough to get good education. Lots of frustration and copying of notes required tho. I knew by young adult this wasn’t normal and gave up after several visits to doctor who every time said all seems normal and was never checked even tho I said I thought I was going deaf. I went private and when all revealed to me it solved the mysteries like I had to struggle and concentrate so hard to try and hear and stuff like cinema and tv cos most of time just couldn’t make out a single word out what was being said even tho to me it was lout. As child I thought it was because the bees were being a bit noisy and couldn’t hear over them. Any well less waffle n to the point. I was advised to wear 2 aids as some frequencies dipped down into profound and would be easier in the future if any changes. No no I didn’t like and they were put aside and I continued with my method of translating Donald Duck into human spk. Excuses were made while out cos was difficult unless121 cos 2 many other sounds and didn’t know wether person speaking or summar like my cat (most unfortunate miaow n would like to block that one out(. Got to stage where by I was sick of endless struggle trying to make out so bit bullet as my fella seen advert at doctors to go see audiologist and am now semi embracing the aids but still struggling a bit telling people. Also having to learn how to interpreted back into Donal Duck. Main point here really is that I feel that doctors are all too dismissive cos at end of day it’s not primarily life threatening and plus thei fact that it’s fairly complicated and unless they have a particular interest and find nothing physically wrong then, for me, they shoo u away.

    My hearing has not deteriorated sine was first told had hearing loss as audiograph almost identical and I don’t think it has from when a child cos have always had swarm of bees the same 24/7 even tho they go mad sometimes. Also now I often don’t use my aids cos I Ishtar pain in ass sometime so if am out hiking etc I leave at home. Initially if don’t use I feel like I’ve lost all together but then comes back like it was when I was ignorant.

    For me the main things that haven’t driven me to total despair is being honest with all whom I need to converse with, asking and finding out either from audiologist n also friends n family cos growing up and young adult no one knew I had a difficulty but many arguments over me talking quietly and mumbling. Finding out and constantly seeking new insight and knowledge around advanced technology that can help but fundamentally accepting cos I can name a few of my friend who have got more disturbing habits/behaviour that embarrasses me especially in public. We all unique n yes anything that don’t work quite right is pain in ass but I count my blessings cos I can still do almost what I want because if the society and county to which I was born into. I don’t live in immediate fear for my life and I can always put food on the table and live in comfort which only a percentage if the world can do. Therefore I do accept ant just fir it in to life and the diversity of it.

    Am sorry the epistle so guess now I need learn how to make simple.

    Be kind to you 😻🐾🐾🐾

    • That’s quite a journey! I think being upfront about my hearing loss has made a bigger difference in my life than just hearing aids alone.
      Thank you for sharing your story, I’m sure others can learn from it.

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