Katherine’s Hearing Story

The beginning of my work as editor for this blog also included a crash course in familiarising myself with the “hearing-impaired” community. As a reasonably recent hearing aid user with mild to moderate loss, I had pretty much dealt with my hearing all by myself until then.

I met Katherine Barnes in a Facebook support group for people suffering from tinnitus and hearing loss. She’s currently finishing her first year of business management in Georgia (USA). Here’s her story:

SB: When did you start thinking something was up with your hearing?Katherine and Shadow.

KB: It became apparent to me in middle school that I was having issues with my hearing. I would tell my teachers and parents that I could not hear them, but it was never taken seriously until I turned 19, about a year ago.

SB: How come you had to wait so long?

KB: I remember that my hearing difficulties got worse as I progressed in school. They got bad in middle school and even worse when I got into high school. I remember failing a hearing and vision screening in middle school, and as a result I was sent to the school audiologist. The standard she went by said I had normal hearing, but another standard said I had slight hearing loss in one ear.

Regardless, she told my mom (who was with me for the appointment) that it was just selective hearing, a result of me having ADHD and other psychological issues such as autism. After that, I gave up on trying to figure out what was wrong with my hearing. I quit complaining about it unless people told me I wasn’t listening; then I would tell them I really couldn’t hear what they were saying.

SB: What prompted you to get tested again at 19?

KB: I got non-stop tinnitus for four months, and hearing got harder for me in one ear, so I finally got it looked at again.

The first audiologist I went to said I had borderline normal hearing. A little bit later I decided to get a second opinion, and this time I was diagnosed with mild hearing loss in my right ear and normal (borderline normal) hearing in my left ear.

This audiologist said that because I had “normal hearing” in my left ear she would not correct my hearing loss in the right ear. She stated that having one good ear compensates for having one bad ear. So I took my audiogram and found a local clinic that would correct my hearing loss in that year.

Katherine Barnes older audiogram

SB: So how much hearing loss do you have now?

KB: Initially when I got tested it was slight hearing loss. Every audiologist I visited seems to use a different scale! For example one scale quotes -10 dB to 25 dB as “normal” hearing, and for another it’s -10 dB to 15 dB, with slight hearing loss from 16 dB to 25 dB. Yet another scale says that normal hearing is -10 dB to 20 dB, and that mild loss is from 20 dB to 40 dB. It sometimes makes it hard to know what we’re talking about!

My hearing is deteriorating: it runs in the family, and they think my auto-immune issues are not helping. My mum also has hearing loss, but was in denial about it when I first started having trouble in middle school. She wears hearing aids now. My last audiogram places my hearing loss around moderately severe.

Katherine Barnes recent audiogram

SB: How have people around you reacted to you having hearing loss and getting hearing aids?

KB: My family knows but haven’t really asked many questions (my grandparents for example).

No one has treated me differently, but I feel more confident to jump in conversations when I find them interesting.

I used to isolate myself socially a lot because I was embarrassed I wasn’t able to hear and had to ask others to repeat themselves all the time.

SB: How has having hearing aids changed things for you?

KB: I got one hearing aid earlier this year and I got the second one as soon as I could afford it. It has been a game changer for sure! I still struggled when my left ear was unaided but it was better having one than none. Since I got the second one, I can hear so much better! It really makes a big difference. Having hearing aids has given me a boost of self-esteem and self-confidence.

Katherine's hearing aids

My hearing aids (BoleroQ50-M13) are purple, and I have a purple and clear cat eye swirl ear mold. I really love them. Because they are BTE, even though I don’t really even notice I’m wearing them anymore, other people do, so if I ask them to repeat something I don’t feel as bad, because it is obvious I have hearing problems.

It’s such a relief to have my hearing loss recognized: I spent most of my life thinking I was going crazy, having hearing issues but being told they weren’t real!

SB: Do you wear them all the time?

KB: Actually, I even sleep with them! They help with my tinnitus. My audiologist worked with me to try to match the frequency of my tinnitus so that she could bump the frequency up a little bit to make it less noticeable. As soon as I take them out my tinnitus is much more noticeable and it’s hard to get any sleep, so I keep them in at night.

SB: I remember you saying that you had learned some ASL. Can you tell me about that? I was surprised that you’d been learning ASL when you had to struggle so much to get your hearing loss recognized.

KB: When I was in elementary school I had severe ear infections, and my mum was afraid I’d lose my hearing because of them. So she put me in ASL tutoring for a year. My tutor was amazing, she was deaf herself.

In middle school I decided to teach myself more ASL, so I bought flash cards and conversational ASL books. I also had deaf friends who helped me. I was going to the high school in my district that had all the ASL interpreters, so I would grab my lunch and go and get a 30 minute ASL lesson during lunch break.

SB: I’m curious. Can you tell me a little bit about Shadow, your service dog?

shadowKB: Shadow is a cross between a mobility dog, a psychiatric service dog and medical alert dog. I’ve had her almost two years, since she was one. I’m working with a private trainer as no organization is qualified to cross-train her for my needs. My GP and psychiatrists all agreed I could benefit from a service dog.

She helps me get around better by pulling my wheelchair, especially on days when I can barely push it (I have an auto-immune condition, MCTD). She’s learning tasks now like retrieving dropped objects, opening the fridge door and bringing me a bottled drink, etc.

When I have a panic attack, she is trained to put her paws in between my legs and lick my face until I tell her to go down. The tactile stimulation helps me come out of it. Having her with me creates a barrier between me and people, which reduces my anxiety when I go out and eases my social phobia. She also wakes me up, reminds me when it is time to go to sleep, alerts me to shifts in my mood, and other such things. She’s very smart!

She also carries emergency medicine I need to have with me at all times.

SB: Thanks a lot for answering all my questions, Katherine! Is there anything you would like to add for our readers? 

KB: If you only take one thing away from this, I hope that this has opened your eyes to the possibility that any level of hearing loss, even ”slight hearing loss” like I had last year, can be very difficult to deal with.

It can affect you to the point where you are ashamed to interact with people, or too worried to go out in public or spend time with your friends. Having hearing aids changed all that!

4 thoughts on “Katherine’s Hearing Story”

  1. Katherine, thank you for sharing your personal story. You really don’t know how many people you have touched. Folks may not leave comments, but this blog will be read by many! You are a brave lady! Best to you and that cute puppy!

  2. I wish the best for Katherine and glad that she is doing so well with her hearing aids and other supports.

    Just wanted to make a comment about some of the wording in the first two paragraphs – there is no ‘hearing-impaired community’ and many Deaf and hard of hearing people would take offense with the phrase ‘suffering from tinnitus and hearing loss’. The phrase ‘hearing-impaired’ is considered to be outdated and it is best to use ‘deaf’, ‘hard of hearing’, ‘late-deafened’, or ‘a person with a hearing loss’. And instead of ‘suffering with’, better terminology would be simply replacing the phrase with ‘who have’.

  3. Hey Kim, thanks for your comment about the wording. I struggle all the time with how to reference people in the spectrum between Deaf and “can’t hear very well”. Not that I used quotes, I hate the word “impaired” in reference to us. What expression would you use to group us all under a not-too-long label? (Hate labels too, but they do come in handy at times.) I honestly haven’t found anything better so far. The “hearing-loss community”? What about those who have never “lost” anything, like me? It’s a minefield!

    As for “suffering”, sure, I get your point. I think those who “have” tinnitus and that I have met in that Facebook support group would beg to differ. So yes, as a general rule I wouldn’t say “people suffering from hearing loss”, but in that specific context of a support group focusing on tinnitus, I don’t think it’s that offensive.

  4. Stephanie, I’ll jump back to give my two-cents worth. I’m new to this, but raising awareness and sharing stories is the mission. I know I have much to learn about hearing loss. I appreciate the efforts you are making. Descriptive phrases and wording is a tricky situation — it’s one that I struggled with as well.

    But in the meantime, please continue to share stories. We are all learning as we go. The mission is raising awareness and helping folks realize they are not alone.

    Have a great day.

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