Dating after stroke

Episode 6, 16 December 2021 (Duration: 27:25)

Guests: Emma Beesley and Rachel Parsons
This episode is about dating as a survivor of stroke and someone with disability. It includes the highs and lows and everything in between.

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Podcast transcript

Announcer: Welcome to the Young Stroke podcast, a podcast for young stroke survivors and their support group, bringing together younger survivors to share their stories, along with tips on living a good life after stroke. The advice given in this podcast is general in nature.

Discuss your situation and needs with your health care professionals. This series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.

Simone: Welcome to the Young Stroke podcast. I wanted to start today’s episode with a quote from research professor Brené Brown. She says: “Connection is why we’re here. We are hardwired to connect with others. It’s what gives meaning and purpose to our lives, and without it, there is suffering.” Today’s episode is all about connection. Meeting new people and more specifically, dating after stroke. Today on the podcast, we have two very special guests: Emma Beazley, a 38 year old who had a stroke five years ago, was previously a lawyer and travel enthusiast, and Rachel Parsons, 51 year old, who had her stroke at 38 years of age and both Emma and Rachel are passionate advocates for aphasia. It’s wonderful to have you both on the podcast.

Rachel: Thank you.

Emma: Thank you.

Simone: So, Emma, I’m going to start with you. Would you be able to share your story with us?

Emma: Yes, my stroke happened when I was 33. Yeah, I didn’t know what was wrong with me. I kept calling my fiancé: ‘I had a stroke like help. Please help.’ But my words made no sense. Eventually, he got me to the hospital and then I had a stroke and aphasia.

Simone: And could you tell us a little bit more about aphasia and what aphasia is, Emma?

Emma: So, aphasia is loss of language, not intelligence. So, it affects communication, talking, reading, writing, comprehension and aphasia does not go away. It’s really hard and frustrating being unable to talk. Yeah, it’s really, really hard.

Simone: Thanks for sharing a little bit about your story, Rachel. Do you mind sharing your story with us?

Rachel: Yes. So I was 38 and I had been getting a lot of migraines. And unfortunately, the doctor thought it was just sinus tablets until the night that I put my smoke out and then hit the floor. My children were there, so the ambulance came, took me to the hospital. My own hospital thought I was drunk or just took two tablets until apparently the next morning when they checked on me again and my head was swollen and they’d done a CT scan and aneurysms had busted in my head. So, straight to John Hunter Hospital, and it was a long weekend, so they couldn’t do anything until they could find someone. Then, they were going to send me to Sydney, but they couldn’t. And then a surgeon came. All of my family apparently had to come and say goodbye to me because they didn’t think I would wake up because I was already nearly gone already. Then I can remember them telling me at some stage that I would never walk, never talk, never drive, never work, never do anything. But I wasn’t happy with that. That’s when I learned what aphasia was. And after being in the hospital for two months when they kicked me out, I had to go and live with my parents. So, yeah, again, had to learn what aphasia was because people don’t know what it is. And then I had to work hard so that I could then finally move out of my parents’ house to get my children back.

Simone: Wow. So both of you have been on quite a journey. I really appreciate you sharing.

And beyond the aphasia, do you have any other stroke impacts, either visible or invisible disability that have come as a result of your stroke?

Emma: I have paralysis in my right arm, hand and leg or ankle, and I’m partly paralysed on the right side, but I can move mine, except I burned myself or anything I can’t feel it, so yeah.

Simone: And so dating can be exciting and fun, but it can also be scary and intimidating at the best of times, and it requires being vulnerable and courageous. How has the impact of the strokes and your aphasia affected your ability to connect with others, especially in relating to, you know, meeting new people and dating?

Rachel: It’s hard. Yeah, it is. It really hard. It’s hard. It took me probably five years before I decided that I wanted to start to find a male because, you know, you feel that you’re not stupid, like you are normal. But it’s hard. So, I tried-

Emma: E-harmony?

Rachel: Yes, E-harmony. And back then, I kind of wrote a lot of things, and I told them that I had a stroke. I have aphasia. I may look fine, but on the inside, sometimes I have a bit of trouble to to talk properly. But I am normal and I told them that I want someone that will accept me the way that I am. But if they didn’t accept me the way I am, they could P off. You know, I just I wasn’t going to have put up with it because they can look at us and they should be able to see that, you know, we are just normal.

Emma: We are normal people.

Rachel: Exactly. You know, it’s just sometimes, early through the day, we’re fine, but as the day goes on, we might be a bit slower to get the words out. We may not have the energy to do the things that the partner may want. So yeah, it’s hard.

Emma: My experiences are just like Rachels’. It’s so hard to date someone who’s normal when you’ve got a disability. But yeah, I’ve got a disability, but I’m normal. And yeah, it’s a Catch-22 like, yeah, it really is.

Rachel: Yeah. Yeah.

Simone: And how long did it take you to feel ready to sort of get back out on the dating scene?

Emma: It took me about four, four and a half years to date and I said to my mom yesterday, 50% of people don’t want anything to do with you, 40% of people who are, ‘Oh that’s hard. Bye.’ And then 10% of people said, ‘Oh, Ok, well, that’s sad for you. Would you like to go for coffee?’ So it’s hard to connect when I have trouble talking for a long time. So that was really.

Rachel: Yeah.

Emma: It’s really, really hard.

Simone: And I imagine that’s just connecting with them in general as well. Is that getting to know each other?

Emma: Yeah. Yeah, getting to know each other. What type of movies do you like? Like, I’m having trouble finding the words that I want to say, but I can’t say it. So, it’s really frustrating.

Simone: And so you mentioned, I think, Rachel, that you tried E-harmony as the first app. What other ways are you getting out there and meeting new people, how, where, is it other online dating or physical events that you’re attending? I’d love to hear a little bit more about what maybe both of you have considered or tried.

Emma: Well, I tried E-harmony and Bumble, and I only met two people in person. And one of them said, ‘Look, you’re really great, but no thanks.’ And the other one said…Well, I didn’t know what he said because he left. So and then I gave up. I looked at apps dating for people with a disability and it was hard. Too wordy for me. Like, it’s very hard to read and I find it hard to understand. So that was really not for me.

Simone: So, and you tried E-harmony?

Rachel: Yeah, I tried the E Harmony and yeah, you know, I met a few people. I went for McDonald’s for coffee so that I could you know, understand what I was saying. I did go out with a guy for a while, and he was partly disabled person as well. But he was kind of one that wants to say, Oh, poor me, you know, this happened to me, look at me, you know? So then I did. I used to go to a club, to a raffle, you know, and sit by myself. After a while, I met a man there and he liked me and we used to talk and things. You know, again, you know, we stayed together probably five and a bit years. Just lately again, I tried to plan a bit. So you know, again, I wrote that I want someone to accept me. This is what I want, all the rest of it. So I was chatting with a few of them and then this night, I started this other man.

And when he read what I wrote, he texts me, and he said he could understand what I was going through because he had a similar thing that happened in accident, and so he had to learn how to walk, and he had to learn to talk to, he had to you know, a whole lot of things.

So he knows what I’m feeling. At the moment, we’re going really good.

Emma: Yeah, I met her man and he’s really nice.

Simone: I’m so happy for you, Rachel. Yeah, yeah.

Emma: And I think for Rachel, but not for me.

Simone: It gives you hope that it’s possible. Yeah. Is it a numbers game based on your experience? Often you hear about dating being a numbers game. You know, and I think, Emma, you spoke about that 10%, you know that were kind of more genuine and authentic and perhaps more open-minded and accepting. So is it a numbers game to find that 10%?

Rachel: Yeah. Well, 1%, actually.

Emma: Yeah, it is really hard to find someone that that can basically understand what you’re saying. And if I say to him, Look, if I’m just here and we’re watching a movie, don’t think that I’m not talking to you. I’m trying to understand what’s happening on the movie.

Simone: Yes.

Rachel: So, you know, I can understand what Emma’s saying, that you know, you’ve got to get a person that will understand what you’re saying and what you want to do

Simone: Yeah.

Rachel: And plus they have to understand that Emma works most of the week. She may only have one day that she feels comfortable and, to go out with that person, you know, and it’s hard to find someone that will accept that.

Emma: Yeah, I’m working part time and I go home at the end of day, and I’m really tired. And, Monday to Thursday, I just veg on my couch. It’s enough, so Friday, Saturday and Sunday are happy days. Yes. And if I was going to date someone, it’s gotta be Friday, Saturday and Sunday. But yes.

Rachel: Yes. And at the moment, basically, that’s what Paul and I are doing. We talk each night. We talk on the phone through the day, and that’s it. But I’m happy with that and he’s happy with it.

Simone: Good.

Rachel: So, yeah, it’s good. And I hope that Emma could find someone like that.

Simone: And it sounds like, you know, fatigue is such a big part of stroke impact. So that’s a huge thing that you’re sharing around that, you know, not having that energy after a busy work week to really give, to say, a partner or even someone that you might be dating. And so, it sounds like education and communication is really important to when you’re seeing someone new.

Emma: Communication is so important. Like, having trouble finding the words. It’s very frustrating, and…

Rachel: It’s hard that that’s where the person has to understand to, to give us the time, to say what we want to say.

Emma: Yes.

Rachel: Not just walk away and say, Oh, it’s all right, don’t worry. Because that’s the part that hurts.

Emma: Or ‘what’s wrong with you?’ It’s really hard.

Simone: And you need them to be willing to take the time to get to know you slowly over time. Yeah, yeah. And I mean, it’s kind of, you know, I guess it happens in dating in general, but particularly Emma, where you’re at, at the moment, how hard is it to deal with sort of that rejection? Like, do you have any strategies or things that you do to support yourself to kind of get back up and, you know, potentially open yourself up to love again?

Emma: Perhaps be honest and patient. And this is me. Take it or leave it. But yeah. What do you think, Rachel?

Rachel: I agree with what Emma is saying. And that is hard. I can understand what Emma’s thinking because people would say to me, ‘Oh, Rach, you’re okay. You’ve got a good smile, you look happy today.’ It’s good to put the smile on when you’re out, but when you get home and you’re there alone, it hurts. So it makes it hard to be able to think, oh, should I try and find someone again, you know, or should I just stay like this?

Emma: Soon I’ll be getting a dog. So that’s, that would be good.

Rachel: But when you are out walking that dog, when someone’s gonna look at you and think, Oh, all right.

Simone: Completely, and I love that Emma. I mean, dogs are beautiful companions, but I agree. But I agree Rachel.

Emma: But yeah, well, my sister’s going to have a baby, so I’m getting a dog.

Rachel: And I know things are different, but like, you’re 38 now. Yeah. So that’s pretty much about when I, you know, it wasn’t long after that that I had my stroke.

Emma: Yeah.

Rachel: So don’t think that’ll never happen to you. Because, you know, I’m 51 and I’m still hanging in there, right?

Emma:There’s plenty of fish in the sea.

Rachel: Exactly there is plenty of fish in the sea.

Simone: See, yeah, I love it. I love it. You two are fantastic. I want to quickly touch on because obviously, you two seem like your close friends. How important is it to have someone else that understands what you’re going through and can be there for you as a bit of a cheerleader?

Emma: Yes, it is so important to have friendships like ours. And, I’m just thankful that I have my aphasia friends. So yeah, when I moved up here with mom and dad, I didn’t know anyone in the area. Like, mom and dad had their friends, but that’s not enough. And when I first had my Christmas party with these people and I was so happy. I couldn’t get the smile on my face like I can still remember that day.

Rachel: Yes. Yeah.

Emma: It was really, really special. And we meet for coffee and yeah, I just love being with a group of friends who have aphasia. And yeah, it’s really, really nice.

Rachel: It’s a lot of people work through the week. Yeah. And you know, eventually, you know, again, I didn’t want to sit at home by myself anymore and especially with this lockdown when you know, then we weren’t in lockdown and I’d be like, Hey, let’s meet up, I’m going for coffee, who wants to come?

Emma: It’s been two years now. We meet up on Sundays. Yeah, and I’ll be on Zoom. Why don’t you come along? So, we could meet on Zoom as well. So yeah, it’s really good.

Rachel: It’s really good. And even like I said, Paul loves coming on Sundays with my friends.

Emma: Yeah, he just loves it.

Simone: Yes, fantastic. I can just see, you know, the amazing connection that you both have. And I know Emma, you’ve spoken a lot about your support group for people with aphasia. So it’s just really lovely to see it and hear it. I wanted to come back and talk a bit about disclosure or disclosing your stroke and the aphasia. I think you’ve both touched on at certain points that. Is there anything more that you have to say around, perhaps there’s someone listening that’s had a stroke, perhaps they have aphasia, or perhaps they have other visible or invisible disability from their stroke. You know, what would you say to them around, you know, should I tell or put it out there on the app up front? Or should I wait? I’m keen to talk a little bit more about disclosing stroke and any of the disabilities that might come with stroke.

Emma: Yeah. So, I do it upfront because this is who I am. If they’re genuine, they will accept me and I’m still the same person, so I deserve to be given a chance. What do you think, Rachel?

Rachel: Well, me, I’m sort of, one of the things that I always say is. Don’t give up.

Emma: Yeah, I yeah, I was. Shopping around the Greenhills shopping centre, and I see like young and old people looking at me like, who is she and why does she gotta, and walking funny? Yeah, so and I just say, This is me. This is who I am. I’m going to put on a straight face and go and yeah.  I think when you’re dating, it’s hard because you have to put on a straight face and you have to say, Well, this is me.

Rachel: Just another quick one with this lockdown that we had, two of our best friends went into Woolies. A man looked at these two friends of ours and the person yelled at them and told them to get out of here. You’re drunk, you shouldn’t be here, you know, so it’s hard. People look at the way people are, either the way they’re walking or the way they’re talking. People just think we’re drunk, but we’re not. We’re just the same normal person.

Emma: Yep.

Simone: So this kind of almost even outside of dating, this prejudice and this stigma associated with disability and particularly with the impacts of stroke and aphasia. And so, you’ve got that in general everyday life. And then on top of that, when you go to date, that’s also there. But don’t give up is the key message that I’m hearing, right?

And that, you know, if it’s a goal, just like other goals, to get back to driving or work or whatever it might be, if dating and meeting someone, you know, a romantic partner or a committed partner, if that’s a goal of yours, you should stick with it. And I’m hearing really strongly, too from both of you that importance of being confident in owning your disability and that it is part of who you are now.

Emma: Yes, exactly right. Just go with it. And like my Poppy said, Keep on keeping on.

Simone: Yes, I love that.

Emma: That’s, I love it.

Simone: That’s great. And don’t settle is what I’m hearing.

Emma: Don’t try to settle. Don’t settle. Don’t settle. Yeah, it’s so hard being on my own. But-

Rachel: She’s not alone now.

Emma: Aw, thanks Rachel.

Simone: You two are beautiful. Yes. Any final tips or advice that you’d like to share? Is there any way if someone’s out there, maybe they’re in a different state to you and they’re thinking about, you know, support, peer support and dating? Is there anything that they should be doing or anywhere for them to go to help get some extra support? Is it really just, you know, having those connections through local support groups or online support groups?

Emma: Connections to support groups, maybe, a disability service that uses dating? Yeah. And just see what you like and go for it and just go for it.

Rachel: Exactly. Just go for it.Don’t think that you can’t do it. You’re not going to lose anything by just getting on and chatting to someone.

Emma: Yeah, yeah.

Rachel: Yeah, try and don’t just sort of say, if someone says, Hey, let’s go to the pub. Probably don’t do that.

Emma: No, don’t do that.

Rachel: I think it’s better you know, to say Well, hey, well, we’ll meet at somewhere for lunch or, you know, go to a café or anything like that. And like I said, just don’t give up. Don’t think you can’t do it unless you try.

Emma: Yeah, exactly.

Simone: Fantastic. It’s been so lovely talking to you, and this is such an important conversation to be having, not only in raising awareness of young stroke and aphasia, but also in breaking down society’s stigma and the barriers around dating with a disability. Emma and Rachel, I can’t thank you both enough for being on the podcast and speaking so openly about dating after stroke. For those listening, we hope this episode empowers you to find whatever type of healthy companionship you’re looking for.

And if you’ve found this episode helpful, please share it with your family and friends. Subscribe to the podcast to be notified about future episodes and leave us a review so more of the stroke community can find us again.

Thank you so much, Emma, Rachel. It’s been so much fun and just really, really a joy to have you on to talk about dating.

Rachel: Thank you.

Emma: Bye.

Announcer: That’s all for today’s Young Stroke Podcast. Find out more about Stroke Foundation’s Young Stroke Project by visiting youngstrokeproject.org.au.

You can listen to dozens of other podcasts on our stroke recovery website, enableme.org.au. StrokeLines health professionals provide practical, free, and confidential advice. Connect with them on Enable Me or call 1800-stroke. That’s 1800-787-653.

The advice given here is general in nature. Discuss your situation and needs with your healthcare professionals. The Young Stroke Podcast series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.

This podcast was produced by Joy. Australia’s Rainbow Community Media Organization.

For more information on Joy’s services visit joy.org.au.

See all Young Stroke Podcast episodes.