Hearing Loss LIVE! Talk Emotional Side of Hearing Loss

Adapting to hearing loss can be overwhelming no matter how you got here--suddenly or progressively. Hearing Loss LIVE! wants to help you take control of your hearing loss.

We find that emotional roller coaster with hearing loss is not addressed when first diagnosed. Nor is it discussed as we continue to navigate our new world or the triggers that remind us how our hearing loss.

We find our hearing partners don't have support on how to deal with their emotions. And the honesty is both parties have different sense of loss and if you can't talk it out there will be harmful outcomes.

Whether you're new to hearing loss or experiencing an emotion due to your hearing loss, let's get together and help support each other! Reach out to us info@hearinglosslive.com

Video with captions of this podcast can be found on our YouTube page. Remember to subscribe while your there!

Transcript

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Hearing Loss LIVE Talks! Hearing Loss and Emotions.

Julia: 0:05

Hello, welcome to Hearing Loss LIVE! This week's blog and podcast is about the emotional side of hearing loss. We often don't talk about it, I think, with each other with our partners with our family, but there is a lot of emotional baggage that comes with hearing loss I call it baggage, it's not really, maybe, I don't know, I'll think about that. I am going to approach it kind of from a hearing person side. Because both sides are going to have some type of emotion. And I'm going to stress I think in the blog, and I think today, you gotta communicate. You need to listen to each other and understand that the emotions and grief are going to be different for both of you. That doesn't mean one's better than the other. One's probably going to be harder than the other. But you need to communicate and and talk it through. I've seen that in life, that that's really important. And it's going to be a change. So get ready. You hearing people, you need to get ready for change, and you need to be able to move forward with that. That's my soapbox, I'll step down. Chelle and Michele, who would like to talk to us about the emotions that come with your hearing loss would want to start

Michele: 1:40

I'll go, since my mics on. If I can ever learn to turn my mic off when we start, it would be amazing. You know, and again, I always tell people hearing loss is the gift that keeps on taking. And that's especially true if you have a progressive hearing loss. And every time you lose something with hearing loss, you're going to go through that whole cycle of emotions again, sadness, fear, grief, anger, depression, feeling panicky when something doesn't work, like it's always worked and not really knowing what to do. And then there are things that you just completely lose. And my part of the blog for this topic, I share a story from a friend who was part of a singing group and a choir when she was younger and no longer being able to hear herself saying and to sing on pitch was devastating to her. And she thought she had gone through all those emotions. And then the story that I shared, tell us about that coming back up and, and you know, we all have those deep, hurtful things that we've lost because of hearing loss. And that's one aspect of the emotions that go along with it. But there are emotional things every day, when we go somewhere and we do the wrong thing. Or we, in our mind, make a fool of ourselves, and we're embarrassed. I mean, all of those emotions just boil up. And if you told me 20 years ago that I didn't have to go through every day being emotional about my hearing loss, I wouldn't have believed it. But over the last 20 years, I really have alleviated most of the emotion in the daily realm about hearing loss. I no longer get embarrassed. I've owned my hearing loss. I've told myself,"you didn't ask to be hard of hearing. Hearing loss chose you, not the other way around." So I've worked really hard not to be emotional on a daily basis. Doesn't mean that I never am, I am. I have days where I just know that I should not go anywhere. Because anything could happen. And I'm going to cry about it. Which both Julia and Chelle know that I'm very emotional person. So there's just tons of aspects of emotional things. It's emotional when your friends and family members don't accommodate you in alternative ways that you've asked them to. Like when you can no longer talk on the phone and you ask them to email or text you and then you really don't hear from the much. That's very emotional and very hurtful. So it just kind of runs the gamut of emotions and I think a lot of people miss that about hearing loss. Because they don't see hearing loss. It's not like if I lost a limb and people would say, oh, you know, I'm sorry. I mean, that would be a visual reminder, they're missing a limb, life must be harder for them. People don't see our hearing loss, they don't see how life is harder for us. And so I think a lot of people miss that about people who have lost their hearing that is a very emotional thing to go through, and you go through it every day, for the rest of your life.

Chelle: 5:27

Okay, this Chelle. It is almost a daily thing. And I don't think I let it affect me as much as I used to. But when somebody is daily turning around, you know, back to me and talking, and me having to ask,"what?" Or reminding them to come closer, because I can't see you that far away. And therefore, I'm not going to hear you that far away. So that's just almost. it's not the full impact of it, but it's a daily, just small hits all the time, like, Oh, my God every day, I'm dealing with this. And I laugh, because that's how I deal with things. But there has been some super deep impacts that I think none of them have been worse than when I lost a big chunk hearing and in 2007. And then I moved in 2008. And that's when you don't know how much of a support system you have in place when people have been through so much of it with you already. And they're helping you deal with it. And you know, you just work together. But then when you move somewhere new, it is a fresh start, and you realize how impactful this last big drop was after all. And, you know, we we teach a class in the State of Utah, and they still teach it from Sam Trychin. And there's a lot about emotions in that class. But we also threw in a lesson about grief and how, how, you know, you're there's a story about going to Holland, you really wanted to go to Italy, and you plan for Italy, and you did all this preparation for Italy. But you find out you're going to Holland, which was like a totally different language, everything new. Nothing what you thought. Nothing much you wanted to see. But then after a while you get used to it. You start seeing some some of the blessings, and oh, Holland is pretty cool, too. So that was my journey with hearing loss with that last big drop was, oh, man, I lost, I lost everything. I felt like my my career, friends, because I couldn't talk on the phone anymore, without Well, I was barely understanding anything. And that was before caption phones. So I just felt like, I lost my whole life. And I was not where I wanted to be. And then here, what, 14 years later, 13 years later, I'm like, you know, I'm okay, where I am now. So I did work through the grief. But I'll tell you, there was two years that I was in a pit and I was in a hole. And I was not my true personality. Because I was trying to work through how to get access to things again, basically. And it took a while and I know I'm really thankful for the Hearing Loss Association support group, our chapter here in Salt Lake. I'm really thankful to the SayWhatClub. Both of those places and some of the state class and it's just really helped me work through it. So for the most part, I'm a lot better now. And it barely affects me. But as Michele said, there are times that just pop up where something new comes in and I'm like oh my gosh, but I don't spend years in that hole anymore. I probably spend hours only and by the next day or the day after I'm like, "okay, I got this now."

Michele: 9:34

I can really relate to what you said that big life change for you when you had a drastic hearing dip and then you move to a different state. I did that same thing in 2006. Around 2006 I had a big hearing dip and then I moved, looking for work, finding a new audiologist and I was just an emotional mess. Because I no longer could talk on the phone, like I wanted. I no longer could do some of the other things that I was used to doing. And I'm a very independent person. And I remember going to this new audiologist and I hadn't tried hearing aids for a couple of years. And he looked at my file, and he said, "Why are you here?" And I said, "Well, I know technology advances pretty quickly with hearing aids, I thought maybe it was time to try hearing aids again." And he looked at me and said, "well, hearing aids work in Minnesota the same way as they work in Georgia." And I mean, it just took the wind out of me. And I said, Well, okay, and he said something about, I don't have a magic wand to give you back hearing. And I said, Well, I'm not looking for wizardry. And I just, that whole attitude of that doctor just threw me in a tailspin. And then not long after that, I had my first experience with the Minnesota State, Deaf, Hard of Hearing Services, and went in there and the director in my area is culturally Deaf. And when I called myself hearing impaired, because I was kind of new to using terminology to refer to myself and my hearing loss, and I got a lecture on why I couldn't use that term. And that was like, you know, not long after the doctor's appointment. And when I walked out of the office, even though I did get some help there for things that I needed, I walked out of the office and immediately burst into tears. Because it was just such an emotional time. So I really relate to you saying how your hearing dip and your move to a new state was so emotional. I'm really glad you had the HLAA chapter and the Sanderson center there. I'm sure that was a huge help.

Julia: 12:07

Okay, so let me ask you, because I'm gonna say right now, your hearing partner needs to be involved with the process of your hearing loss. I think I say that all the time. But do-- maybe this is for Chelle, let me think how to ask this. Do you think? If--you mentioned recently to us that one of your kids, said, wow your podcast really made me understand more certain things about your hearing loss that I really just didn't understand. If people -- how do we get people to get involved with that sooner? I don't know, how, how do we get the hearing family member to participate? And I know that there's, I think sometimes the family member understands there's grief. I know I did. I remember lots of little issues. I don't know that I had anger over grandma's as much as I had grief in the change of our relationship. And we all know I'm the class clown. So when that couldn't be the case anymore, it did change our situation. But I always knew her loss was bigger. It wasn't just losing the communication she had with me. She was a very big social life. She loved parties. She loved to be the center of the party. Loved her bridge outings and and it was really clear, even in her face, that loss was huge for her. And I think because of her age, maybe our discussion openness about it was a little different than if it's a younger or middle aged couple going through it together. How do we get them involved in something, some training out there, even if it's us or I don't I don't care who it is, some way to come to the table before the emotions-- Chelle mentioned the class and and our Living with Hearing Loss class that they teach here in Utah at the Sanderson Center. And and I have seen raw emotions where the couple just didn't come to the table before they realize their grief. And sadly, after that class, they disappeared. It used-- We, we had a couple times I've seen that it turned into kind of crying and upset and you don't understand the changes I'm going through and you don't understand the changes you're going through. And then they just never came to the last couple of classes. So how do we, how, I don't know, how do we get to people before that happens and get them? I don't? I don't know there is an answer. But, Chelle?

Chelle: 15:31

This isn't a total answer. But I know that, you know, okay, I'm gonna go back because my husband, Ken, he understand. He's never had anybody in his life with hearing loss before. And back in 2008, early 2009. When I was in that deep, dark hole, I like to say, I would come home, crying from work, and just throw myself on the bed, have a good cry, to release, all the frustrations with trying to answer the phone and trying to hear in the salon and just coming home and completely breaking down. And he broke down, too. He would just lay on the bed and cry with me because he had no idea what else to do. And then, I think another part of his grief was was that I stopped going to movies because I couldn't understand movies either. And so he stopped because he felt too guilty going by himself. So I know there's there's two sides there. And I think I broke through with my family by sharing. I started a blog and I my mom was reading it every time I wrote and she started to understand how I heard. She was learning the things that I learned. So I think writing was a good outlet for me back then. And the blog. I mean, I vented I shared, I shared happy moments, I shared bad moments, I shared my exact struggles in it. And I like to think that we're doing that right now with the podcast. And I think it's really important if you're hard of hearing that you share these pertinent podcasts and blogs with your family. You know, there's so many ways we have access video, we have audio access only, like for people who listen to podcast through Spotify and stuff. So share these things, help them understand the grief. So that was my outlet.

Michele: 17:39

You know, I think I kind of missed the window with my family to include them. Because for so many years, I felt like hearing loss al of this weight sat on my shoulders, it was my thing. It was something I had to deal with. And I mean, they had to deal with it too. But I think I kept it to myself, I've always been a self sufficient person. And I was brought up to think that I had to take responsibility all myself. And asking for help was not a good thing. I learned that that was drilled into me when I was a kid. And so I think I missed my window because I was in my 40s before I realized I had to share this big weight of hearing loss. And so my kids were already going off to college. I made it easy for none of them to have to really deal with my hearing loss much. And so I feel like I kind of missed my window. And by doing that I did a real disservice to myself and my family members. It's better now but I mean it's still emotional. And when I talked about not having the emotional aspect of of the every day I'm talking about me going out on the world by myself and dealing with situations when it comes to relationships and what's family. It is still emotional. I mean I just about every day I have to tell my husband not to talk with food in his mouth because I can't lipread him when he's eating and talking at the same time. And that makes me really emotional. Iakes me really angry some days and I don't know. I and I I think I blame myself for my family's kind of disconnection, to my hearing loss and a lot of ways. In fact, my daughter-in-laws in a lot of ways are much more accommodating of me and much more in tune about what I need and how to include me than my own spouse and a few of my kids. So we've we're working on that. You have to continually work on that. But it hurts when you feel like people aren't putting in the effort that's required to learn how to communicate with you. And that's also on me, I have a responsibility there too. So I'm not blaming anyone. But it is frustrating and frustration is an emotion. So I do have those day to day emotions, and my home life and family life. When I'm out in the world, just doing things traveling, I'm great. I don't really get fazed much about anything. But yeah, when it comes to people you love and you're connected to emotionally, it is still emotional. I hope my family watches this podcast.

Julia: 20:48

Right? The whole goal in it. I have outlined a workshop that will hopefully offer some day for the hearing family to understand better. I am always amazed. So I went on a rant before we sat down to meet. Sorry, my My watch is saying I'm not exercising enough. A whole side note, sorry. I went on a rant earlier. But I'd had the same rant with my family over the weekend. And the frustration. So I'm going to go at this as a CART provider, captioner, my frustration that our community, CART providers, need to really know get to know their hearing loss clienbt. And by that I don't mean have a personal relationship. That that's a whole other. Yeah, I know, Chelle we passed that boat a long time ago. But um, I have clients they that are not personal relationships, but our working relationship is around what their needs are, right? And so I was really frustrated and my son's like, What is there not to get maybe I'm not understanding because you raised us around the hearing loss. That's just what we know, this just is sounds so dumb that they can't get it. So I get some anger there for folks that are hearing in the industry who do not take the time to learn the differences. I, that's that's an emotion I have that has nothing to do with anything other than sit down and learn your industry do not assume one size fits all. Truth is one size doesn't fit most. Bottom line. Instead of getting angry, what can you change to help make the communication again, it's all about communication, right? How do you make the communication happen better? And being honest, I'm really sad today because I can't just talk to you in the car. So give me just a minute to, to get over that type thing. And being honest, I think really helps in talking it out. Because I think there's, again, what I've noticed is people don't, the grief with hearing loss that happens because it just happened, right? So someone's hearing, and now they're, they have a hearing loss. That's a huge grief period. And as a hearing partner. You don't understand what I see is people who just don't understand. You need to stop right then and find a way to understand better. We interviewed Liza Sylvestre her poems a perfect go listen to this. We have sound simulators on our thing. Go listen to that so you can hear what that person is missing. And how I guess this is an unopened question, but maybe we can one of our Talk About it Tuesday's brainstorm this. How do we make audiologist patient centered? Bottom line. I don't know if my mouth opened when Michele was telling her story. My grandfather was a physician and he was Patient Centered before there ever was. He, he knew whose nursing staffs' parents were admitted to the hospital, didn't matter what it was, and he visited them. He made sure they were being taken care of correctly. He was proud to be one of the founders of the University of Utah's Medical Centers. So he, he spent the extra time and went the extra mile. And in the past couple of years, because I CART for medical programs, patient centered is the focus again, it's coming back around, and I think pharmacies doing better. I think some of the physicians -- with COVID, I don't know because I don't go to the doctor, but, are trying harder to be patient centered. But it seems to still be audiologist aren't. I know that that the University of Utah has a program that that that's what they're trying to train their, their audiologists coming out into the field. But then they go out and they intern with an audiologist and it's not patient centered, they're being given the exact opposite information. So how do we as clients? I don't know that's a huge subject. And I'm not sure it has anything to do with emotions. So I might be just on a rant today all together, but emotionally bothers us. Right. Michele?

Michele: 26:41

You know, we've been trying to come up with a way to do some mentoring. And and, you know, I say that I kind of take the responsibility all on myself. But you know, back then, and even today, there's nothing out there for the emotional side of hearing loss. It's not addressed at the audiologist. it's not addressed at the ENT, and there's just nowhere to go. And so I think if audiologist had some kind of a mentoring program, where their patients get together with other people, and even their family members, they could do family mentoring, that would be so helpful. And it just wouldn't leave all of us hanging out there trying to figure out what to do. I mean, there are millions of us. And we're all asking the same questions, we all seem to see the same gaps and holes, and and we're all trying to fill them. There should be a way that we can all come together and make that fit. Whether it's a new medical model of adding, adding something to the mix. Maybe audiologists office should employ a counselor. I don't know what the answer is, but there needs to be something. And I think mentoring would be a good place to start because the emotional side of hearing loss is not treated in any way that I've had in my own experience at the audiologist or the doctor's

Chelle: 28:17

This is Chelle. I was thinking about my first ENT office. experience where I had tinnitus turn on suddenly, and I was awake all night, not sleeping. And it was it was pretty devastating. Because it seemed to, again, change my whole world having to live with this high pitch squeel in my head. And I went to the audiologi- ENT. And he sent me to the audiologists. And they discovered I was in normal range. But you know, now they have that Hidden Hearing Loss thing. And I totally suspect it was hidden hearing loss. Even as a teenager, it was you know, problems with noise. But here I was, you know, trying to figure out how to live with this invassive noise in my head. And it you know, lack of sleep. Trying to get through beauty school at the time. So there was all that noise there and maybe that didn't help. I don't know. So I was I got the hearing test and that was fine. And the ENT said, "you have tinnitis. You have to learn to live with it." Didn't tell me howw. Didn't tell me what to do. Didn't tell me any other place that I could go. I mean, it was it was devastating. It was a bad experience. And it took me seven years to go back to an audiologist. I -- because after the way he was I'm like, Well what if the next one just tells me to, you know, just learn to live with it. So I do think doctors and audiologists need to be careful what they say and have some sort of compassion. Because it is it's devastating. And it prevents us from going back for several years.

Julia: 30:19

I'm also going to say it's how people get led down a road that says, "ooh, I can cure your tinnitus," when there's really no cure, right? Doctor sends you home and tells you to live with it, you're not understanding that. And you know, you get desperate enough you're going to buy, you're going to buy the snake oil as the saying goes, just to try to cure that. So that's, that's another reason. Yeah. Michele?

Michele: 30:49

the thing about saying learn to live with it, there's nowhere to go to learn to live with it. You just have to go through trial and error. And there's no one to talk to no one to give you any kind of instruction. And you know, I've had a hearing loss in childhood. I'm 60 going to be 63 this year. So I've had a lot of experience of not having any help. And hopefully that's changing. I hope we're changing that by doing these podcasts and these blogs and helping people realize that they have a right to ask for help with these kinds of things. Because emotional issues and the trauma around hearing loss is very real and very debilitating, and affects us in such a negative way.

Chelle: 31:38

I just want to bring up that I got a report in my email this last week from Auditory Insight. And they talk about over the counter hearing aids and, and how they hope to get past the stigma. And maybe some of the grief, who knows, because I think those kind of go hand in hand together. One of the things they talk about is the Built Back Better Act. And in that act, they're changing the way audiologist operate. And that part, because they could never be offered anything other than looking in your ears or something like that. So now for Medicare, they want to cover 80% of the hearing aid cost. And they want to offer Rehabilitative Services reimbursement. So now the rehabilitative services, it's like wow, this Act hasn't passed. We don't know if it will or not. But I think that's a step in the right direction is to include the rehabilitative services, mentoring services. Let's learn to be more successful with our hearing loss. And I have I have a lot of hope.

Julia: 33:03

Thank you for reminding us about that. People should probably look into that more. Look at the legislation. I know there's pros and cons to it. But if there's parts that help Medicare, that means private insurance will follow suit shortly thereafter. And that's a big one. Because I think, personally, though hearing aids are great if you can use them. Whether you can use hearing aids or not, the rehabilitation part is the part that's that's needed. How you're going to adapt to that hearing loss. And the family support that's not offered right now needs to be there. So I encourage I don't care if you're the hearing person or you're you have the hearing loss, come to us. Send us emails, send us come to the website, join the podcast. Open, open dialogue with us. We want to talk with you directly and help you with these types of situations. Maybe it's just even a safe place to come in and complain so that you can figure out how you're going to move forward. I get it. Sometimes you need somewhere else to talk right to get through the emotion and figure out how you're going to adapt. We're good listeners. Hearing loss or not. We're good listeners and we're good readers so we can if nothing else, just come explain what you need help with or don't need help with. That's what I think sometimes we need. Just a safe place to come and just talk it out. Hopefully, if we can get some grants and/or classes up and running and moving forward, maybe we do add a rehabilitative service into it that maybe audiologists can use. If, if the Act does, you know, pass. I don't know if that's an interesting thought. Whether it passes or not, maybe we figure out how to make that end happen. So keep watching us. Subscribe to our pages, attend our classes. Help us keep moving forward. Come to Talk About It Tuesday. Doesn't have to be necessarily anything other than a gripe session, I think sometimes is okay. So. Any other thoughts, ladies, as we know, I can't see the clock, so-- don't have my glasses on. We hope this helps a little bit. If nothing else for you to think through what your grief emotions, wherever it is happy, sad, angry, you're going to experience them all. And we hope this helps you to know that that's okay. Next week is pretty exciting. We have a guest again, it's Salt Lake Acting Company. And we here in Utah are super excited by them. Because this is a very small local theater who isn't hiding behind the ADA. And I'm sorry if I make a bunch of people mad saying that. But they are not hiding behind the ADA and they are going out and offering all sorts of accessible acting performances for those with disabilities. And so we will sit down and talk with them on how they did that. And why they did that. And hopefully it's a podcast you can take to your small local acting company and say, look, they can do it. You can do it. So on notice there all US smaller businesses. We're we're gonna figure out how to make you be accessible and inclusive. That was my Maclain coming out there. Thanks for joining us. Remember to subscribe to our YouTube page. You can find us on Buzzsprout and most streaming podcast stations like Spotify and iHeart and Pandora. There was something else you wanted me to do at the end to talk about and I can't remember Chelle, I meant to ask you beforehand that maybe you can take over and close this out. Because I don't remember. Do you?

Chelle: 38:01

No. I can go back over there.

Julia: 38:04

Alright, we'll try it next time. I think it was just Just a reminder, share us. Make sure that that you you share with your hearing, family, friends and neighbors and reach out to us. I think that was it. Anyways, see you later. Bye. Did you go out and request assistive listening devices or CART or use a speech-to-text app? Let us know how it went here at Hearing Loss LIVE!