Dear Nina: Conversations About Friendship

Disclosing My Invisible Disability Increased the Intimacy In My Friendships: Estelle Erasmus

Estelle Erasmus Season 1 Episode 97

Episode #97: Invisible disabilities can turn into a source of shame and unknowingly get in the way of friendships. What is an invisible disability? It's any condition that is not obvious, perhaps even to the closest of friends. Some examples are depression, anxiety, other mental health diagnoses, as well as physical conditions such as chronic pain, fatigue, and too many other examples to list where symptoms are felt but not seen.

This week's guest, Estelle Erasmus, shares her experience with genetic hearing loss that began in her 20s and stayed a secret long after she started wearing hearing aids. In her piece for Shondaland.com, "I'm Learning to Listen in New Ways" Estelle shares the stress of keeping that secret from friends and the deep relief of telling the truth. I'm grateful to share her perspective with Dear Nina listeners.

 

Meet Estelle:

Estelle Erasmus, author of Writing That Gets Noticed: Find Your Voice, Become a Better Storyteller, Get Published (June 2023), is a professor of writing at NYU, the host of the Freelance Writing Direct podcast, and a contributing editor for Writer's Digest. She has appeared on Good Morning America and has had her articles discussed on The View. She received the 2023 NYU School of Professional Studies Teaching Excellence Award, a 2023 Zibby Award for Best Book for the Writer, is in Poets & Writers “Best Books for Writers”, and is an American Society of Journalists and Authors award winner. Learn more at www.EstelleSErasmus.com (and receive a free pitching guide). Also, follow Estelle on Instagram, TikTok, and X, and sign up for her Substack of craft advice, stories and opportunities at estelleserasmus.substack.com



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Let's connect over all things friendship!

[00:00:00] Nina: Welcome back to Dear Nina: Conversations About Friendship or welcome if you're here for the first time, I'm really thrilled to have you here. We talk about adult friendships, the ups and downs, all the stuff in the middle, making friends, keeping friends. I am Nina Badzin. I've been writing about friendships since 2014.

We are talking today to Estelle Erasmus about a really different kind of topic than I've done here before. We're talking about a secret. That you might keep from your friends out of shame could be secret, could be anything.

And this case for Estelle, it was a secret she kept for a very long time about her hearing loss. She started noticing the effects of hearing loss that were both from genetic and from experiences in her life, like going to very loud rock concerts. But a lot of it was also a genetic situation that presented itself starting in her twenties.

And it took her a long time to come around to the idea of wearing hearing aids. And even once she did, so she was able to feel less isolated and participate more in conversations. And Just know what was going on Differently than she was for a while. She was compensating for a while She still didn't tell her friends So she was still keeping this secret, which was adding to a feeling of shame and she will tell you more about what it was like to write about that secret and to Let it go and let more friends in. 

[00:01:28] Nina: Estelle is the author of Writing That Gets Noticed: Find your Voice, Become a Better Storyteller, Get Published. She's a professor of writing at NYU and the host of the Freelance Writing Direct podcast. You can find lots about Estelle. She's been a huge asset to many writers. Many people have gone to her to learn how to get their work in magazines and newspapers, and that will all be linked in the show notes. Without further ado, we're going to welcome Estelle to the show.

Welcome Estelle. I am so grateful that you are here today and it's so nice to finally meet you in person.

[00:02:05] Estelle: It's great to be here, Nina. I mean, we've known each other for years through things we've been involved in. I think we were both with Listen to Your Mother and we were in anthologies together and through social media. So I feel like I know you even though this is the first time we're actually speaking face to face via Zoom.

[00:02:24] Nina: I wanted to talk to you because I was so touched by your piece in Shondaland and you've done so much work in so many publications, some reported pieces, some personal essays, and this is really a nice mix of both.

And it's called “I'm Learning to Listen in New Ways.” And I'd love to hear in your words what that article is about so the listeners can be up to date and we can dive into our topic.

[00:02:49] Estelle: Sure. Well, this is a topic that I wanted to write about for many years, but I was scared. I felt ashamed. And it's because I've had hearing loss for decades. It's a combination of genetics. It's from my mother who has it and her father, my paternal grandfather had it. And also I believe because I went to rock concerts as a teen and in my early twenties and listened to a lot of loud music.

And I think it was just the potent combination of Genetics also external. I started having hearing loss and for about 20 years, I've been wearing hearing aids in both ears, underneath my hair nobody knew about it except my husband, who I'm going on almost 19 years of marriage, my daughter knew, and I think my best friend knew, other than that, even the people closest to me didn't know. It was, you know, A source of shame for me.

[00:03:56] Nina: You know, you do a beautiful job in the essay of talking about the concept of an invisible disability. I think people have gotten a little more comfortable with that term, but they assume a lot of times people use it for mental. And I think Illness of some kind, which is true.

Also, I mean, I don't, to say that that's not also an example. People talk about hearing loss that much. And you said something, I want to quote your own words too, if you don't mind, cause they are so nicely written. You said, unlike glasses that immediately put the world into sharp focus, hearing aids don't instantly relieve the problem.

Instead, they amplify all sounds equally from the noises of the road. When you're driving. To the conversation at the next table, when you're at a restaurant And I bring that up because even in the solution to this invisible disability that you are dealing with, It's not like an automatic fix it.

[00:04:43] Estelle: Absolutely. It adds stress. I mean, when I'm out in public, if there are several people talking, I kind of hear everybody equally. And my brain has to work to figure out who's saying what. Now, most people still wouldn't realize it because I started using the hearing aids at an earlier age.

And so my brain was able to adapt people who use hearing aids later. In life, sometimes their brains don't adapt as well. So it's less of a struggle, but it's still a struggle. It's still stressful. it's actually the fact that people know now is kind of a relief to me because I can now just say I have hearing issues. You know, can you repeat that? Or I can't hear you. I used to say to people, I can't understand whispering. Cause you know, in a movie theater, somebody would whisper something to you. And I'd be like, I couldn't hear it. Or if I'm in the back of a car and somebody's talking to me from the front, I can't continue that conversation. I think that's the first time I realized that I really started to have an issue. And also when I was in, I was working in the, an office and somebody said something in a meeting and then I repeated the same exact thing. I wasn't, copying them. I just really hadn't heard everything that they had said.

[00:06:09] Nina: and I think you're right, there's a lot of shame around it. What did it take to ultimately get you to go to an audiologist?

[00:06:15] Estelle: Well, I think it was really, when that happened at work, I had a boss and it was when a boss came over to me and said, Estelle, the head of the company thinks that you may have a hearing problem. And I said, Oh, and it was like a revelation to me and something else that happened. There had been a fire drill I hadn't heard it because it was at a pitch level that I guess didn't really register with me before I had hearing aids. everyone had left the building and the monitor came and saw me working and said, why are you still here? There's a fire drill and I had no idea. So the combination of that and what my then boss said audiologist for the first time.

[00:07:01] Nina: So you were motivated to go, but to, to your point and really pertinent to this essay and to this episode is a lot of people don't even with the boss coming, even with a safety issue, like the fire, so many people. Don't go, even in an older age where maybe it would be less of like the shame that you felt.

I mean, it's more to be expected they feel so isolated and you wrote a little bit about that. Can you say a little bit more about like that isolation, which I'm sure you felt too before you went?

[00:07:28] Estelle: Yeah. And I wanted to point out, that, according to the world health organization, 430 million people worldwide have disabling hearing loss. they note the national institute on deafness and other communication disorders notes that only 16 percent of adults between the ages of 20 and 69 who need hearing aids have ever actually used them.

And in fact, when my article came out. I was getting messages and emails nonstop from colleagues, from people in the writing world, from students, from all sorts of people saying, Oh my God, I think this is what my husband has. Or, Oh my God, I think I have this. I need to check it. And, or somebody said, you too. People, we're really, really kind and people were also really appreciative that I brought this invisible disability to light because as I said in the article, if I write about what scares me, it no longer has the power to shame me. and that is really, really true.

And it has, been something that has permeated kind of every aspect of my life in a way that I didn't expect it to, when I wrote it.

[00:08:50] Nina: When you were in the stage that you didn't quite have them yet. I know it's been a while So you really had to remember back because You know, thank goodness you really decided to kind of get over whatever shame you might have felt and get them. But before you did, what was it like when you were out with a group of friends? Did you find yourself sort of faking it a lot?

[00:09:09] Estelle: I think it was insidious and I think it crept up on me. I always felt in a crowd situation. It was hard to hear, but I thought it was hard for everyone. So I maybe just hung out or do the fun things. And I remember at a bar, we would sing New York, New York at the end of the night and everyone, one would be hugging.

And it wasn't like you really had deep conversations that you had to keep track of. I didn't feel. It's so much then, but I think really in the business sense, that's really where it hit home. Because if you want to have a professional reputation and people are thinking that you're either not listening to them or. Or that you're repeating their words and trying to make it your own. That's problematic. And that was something that I wanted to nip in the bud when I saw that that's what was happening.

[00:10:07] Nina: what speaks to me so much in this idea is in your case, it's hearing loss. But this can really, applied to anybody who's holding onto something that is holding them back in some way that, like we said, it has a solution of hearing aids. It's not a perfect solution because that has its own, you got to get used to it.

Your brain has to get used to it. There's the background noise issue, but there is something you can do. But maybe the biggest help was actually being honest with your friends about what was going on.

[00:10:36] Estelle: Well, I wasn't for years because I was so ashamed of it. So I had the help. I had the hearing aids, right? What happens sometimes, I mean, I have long hair and I have a low hairline, so you can't really see the hearing aids and they're tiny, you know, I'm even wearing earrings. I'm even, but if you look inside there, they are, they're little, they're not like the big, Ones that we're used to seeing on senior citizens or our grandparents or anything like that.

And I've even worn my hair up and just had like, you know, little tendrils and nobody can see it. what happened with me is I would go to an event or something and people always want to hug me. And so I would hug, this was before the pandemic, and I would hug and say, Sometimes if they pressed a little hard, my hearing aid would beep and You know, sometimes people would look around and I'd be like, and I remember I was at an event and I hugged someone and my hearing aid beeped she said, what was that?

That's a hearing aid. What was that? What was that? And I was like, I don't know. Cause I was ashamed so I was with friends. So I realized something and I said to my husband, I know what I'm going to do when I go to hug people at parties, I'm going to make my hearing aids the lowest so they don't make any noise.

And then after all the hugging is done and saying, you know, hello, Then I'm going to raise the volume. So that was sort of my work around. And then I would do the same thing when I left the party you can control it either on your phone, the ones that I have, you can control it either on your phone or through just like touching the back of the hearing aid.

It just looks like I'm, you know, fixing my earring or fixing my, hair. Okay. And so that's what I would do to make sure that it didn't be, but sometimes I was caught unaware, I was done and I raised it and somebody came and they hugged me big bear hug it would be, and I would hear it and I would think that they would hear it.

so that was one thing. and I just felt If somebody knew that I wore hearing aids, that I would seem old. I mean, I had my daughter in my forties. She's 14 now. I felt like people would maybe think that there were something slower about me. And so I just didn't want to add any fuel to that fire.

And I just wanted to keep it. Very private. 

[00:13:19] Nina: it's amazing the lengths we'll go to, to like keep something secret, right? the turning of the volume up and down at the certain times and, you know, pretending you were fixing your hair and, Now that you've let that go, yeah, you said it was a relief. I mean even just writing the piece I know that a couple of people knew before you wrote the piece, but now that you wrote the piece It's like all of that can just 

[00:13:41] Estelle: I feel so much lighter since I wrote it because I don't have that secret. I don't have something that I'm hiding. there was an enormous energy that is psychic energy, I believe, that goes into you. Hiding something about yourself that is important to you. And so hiding that, took energy, took stress, making sure that nobody knew about it.

And also the energy of feeling I was less than I was not as good. whereas now I say it outright. I say, I've hearing issues, so this year is better. Maybe you can sit next to me here and I was at an event. Actually, I'm part of the women's media group and I just actually did an event with Zippy Owens.

I know you did an event with Zippy recently I was at in person It was after I wrote the piece for Shondaland. I said something like, Oh, I have to adjust my hearing aid. And the person goes, that's a good reminder. I have to adjust mine too. I just said, Oh my God, I love you. I have to stay in touch. It brought me together with people.

[00:14:55] Nina: So Estelle, I want to ask you, what motivated you to ultimately write about it? I know you write about a lot of things, like I said earlier, you write for a lot of publications, you help other writers get published,  and you can write about any number of things that have and are able to, cause you're so good at pitching it and getting it in places. What made you decide to ultimately write about your hearing loss?

[00:15:15] Estelle: It was something that I had been thinking about, in terms of my daughter, and I used to write a lot of parenting pieces, and I've written a pieces have gone viral for the new york times, like how to bully proof your child. And I've written pieces that have gone viral for the Washington post. My child was out of control.

Here's what I'll do to fix it. putting the onus on myself, not that she's the problem, but she learned from me. I pulled things out of the shadows. A lot of times that people. to reading or learning about, and it's helped people in that way. I've written about an ectopic pregnancy that I had, and I've written about an inappropriate therapist I had when I was a teenager.

I felt like I don't know what it was, but my daughter's a teenager now. And the fact that I have hearing loss sort of became a tool in her toolkit of the arsenal that they use to separate from their parents. And particularly from a strong mother figure, which I am, she sees me as somebody very strong and somebody that she different, she wants to differentiate from.

And I, Totally support that. And she's actually very clever that she found a way to use My hearing loss against me by over enunciating and kind of acting like I was a little slow or not wanting to repeat to me. I just thought, even though I stopped writing, parenting pieces in general, because she's a teenager now, and she doesn't really want me to focus on her as my subject with her agreement.

I wrote about it for Shondaland. I thought this was a great place to share something that I thought could help people. And it really helped me and it helped my daughter and, me have a better relationship when I worked out a way to help her understand me and to show my vulnerability, it was okay for me to say to her.

I feel bad when you say forget about it and don't want to repeat it to me and by the same token I had to be aware that pick up or morning time or right before she went to bed is not the time to have discussions where It's important for me to hear something and so I've made sure that there are ways that we interact together that's more positive that doesn't get me frustrated and that doesn't get her frustrated I talk about that in the article and so I've helped my students also share what's important in their lives and in a way that doesn't, as I once said, don't blow up your life for a byline.

And I talk about that in my writing book, writing that gets noticed I also make sure that people don't write about things that are going to hurt them really badly. Like if they are, you know, Separated or going through a divorce. Don't write about your rage towards your kids because that's going to hurt you in a custody hearing. So I feel that that's part of my responsibility.

I wrote about my daughter with her understanding and her reading everything and vetting everything and my husband too. I feel very comfortable in what I shared. so you have to know, you can share. What's going to support the story and support the relationship but you don't have to write every little nuance. It's just what moves the story forward.

[00:19:07] Nina: So what happened when friends read it?

[00:19:10] Estelle: one of my friends texted me, and said, Oh my god, I think I have this. I just made an appointment with an audiologist and I was like, and another friend texted me and said, my husband's gonna call you right now because he has the same issue. he's been wearing hearing aids and he didn't tell anyone.

And now you've made him feel brave and he's telling his friends and people were Facebook messaging me who I knew through, our writing groups and said, my son-in-Law has this issue, and I'm going to show him your article not that I'm trying to be the saint for hearing loss or the, you know, this is not the mission in life that I have, but, you know, there are a lot of people that have great resources and great information, but I am happy to take something out of the dark and shine a light on it.

That can then help me, my family and other people.

[00:20:11] Nina: and it's beautiful and you said in your piece hearing loss could contribute to many serious medical conditions including higher incident rates of diabetes cardiovascular disease and falling and that according to a 2011 John Hopkins study people with even mild hearing loss are twice as likely to develop dementia Especially if they are isolated, that's really how it relates to friendship, too I mean, it's so Major and important all the way through the last days of our lives to have social connections.

And I absolutely see how hearing loss makes people isolated. Even when you're around people, you feel isolated, you feel frustrated. I could see that people would stop making plans because you're like, Oh, it's too, why, like, why get together with people? If you're always going to feel kind of left out of the conversation.

[00:20:56] Estelle: Well, my friend who, told me that she was going to an audiologist, I remember being in group situations with her and somebody would say something and she would just smile and nod. And I thought to myself, does she have a hearing problem? And is she just kind of pretending that she knows what's happening?

And in fact, in terms of what you said about the illnesses and the comorbidities, my dad has Alzheimer's. He never had hearing loss. But he actually deals with the hearing loss now as well. I'm aware that keeping social aspects of my life open, making sure that I'm always learning and, the fact that I'm teaching and working with words is a way to keep, you know, My brain engaged and I'm a very, extroverted person, but I also need that time to recharge.

And I do believe the time that I need to recharge is probably because I have the hearing loss. it does put a little bit of an extra strain on me, but it's just so much easier. Like even if I'm speaking at a conference, I'll say I struggle with hearing loss. So if you can repeat slowly into the microphone, your question and people are more than amenable to doing it.

nobody so far has been like, Oh, you suck. You know that you have hearing loss. So the things I was worried about happening, haven't happened. it just showed me that your mind can make you a prisoner. You don't need to put restrictions on yourself. You can be who you are and it's just a small part of you. It's not all of you.

[00:22:37] Nina: That's really a beautiful place to end. Like you're such a good writer. you wrote our, just out, just speaking, you basically wrote in a conclusion right here. Estelle, thank you so much for being here. I think this will help a lot of people. I think there's going to be people kind of like when your article came out, there's going to be people who see, however, I titled this.

I haven't decided if I'm going to use hearing loss in the title or something about secrets, because we actually ended up talking about. Keeping something to yourself that actually is separating you from other people is its own issue.

[00:23:07] Estelle: yeah, , I was thinking about this a little bit, Nina, like making your invisible disability visible, you know, the friendship benefits of making the invisible visible, something like

[00:23:18] Nina: See you're forever an amazing editor. 

[00:23:21] Estelle: I wrote cover lines for magazines for decades I'm learning to listen in new ways was not my title, but I think they took something on the deck that I suggested.

[00:23:31] Nina: relates to the conclusion of your piece, which I like, a lot. All right. We're going to say goodbye, but thank you. Thank you again. 

[00:23:38] Estelle: Thank you so much for having me, Nina, and for giving me the forum to help make my invisible disability visible to your listeners.

[00:23:49] Nina: Thank you. And I know it's going to help a lot of people. And as I say every week, when our friendships are going well, we are happier all around. Bye. 

You know how when you listen to a podcast, the host always asks you to review it on Apple Podcasts, Spotify, wherever you listen. Apple seems to matter the most. I guess it makes a difference when someone goes to the search bar, if they put in friendship and they wanna hear things about friendship. If a podcast has a lot of reviews and stars, then that is what gets shown. I am on my way with some great ratings and reviews, but of course I could always use more.

So if you have enjoyed this episode or any other episode, I would so appreciate if you would take the time to do that. One other really helpful thing, is to just share it with a friend. The third thing I'd say is share it on social media, actually there is a fourth thing. I am on CK at Dear Nina. Conversations about friendship where I have a free newsletter at least once a month and once a month. I have a paid version, which is where I take the anonymous questions I receive and give my full thought out answer.

Thank you for considering all of that. I appreciate your time and I hope I'll see you again next week. Bye.

 


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