BONUS EPISODE: Loss 53/101 Part 2: Jonathon & Laura Burns on alopecia, dating and hope through ill health

BONUS EPISODE TIME!

This is The Silent Why, a podcast on a mission to open up conversations around grief, to see if hope can be found in 101 different types of loss.

In last week's episode (Loss 53) we spoke to a friend of ours, Laura Burns, about alopecia and coming to terms with the loss of her hair, but she wasn't the only one sat in the podcast studio for that in-person interview.

Quietly perched in the corner was husband, Jonathon (a friend of ours, which is how we met Laura in the first place).

In the episode last week Laura shared about losing her hair at the age of 22 years old through alopecia (in 2011) and the challenges this can raise when dating and choosing what information to tell people and when.

[And you might want to hear that episode before listening to this one, link below].

So, we decided we wanted to chat to Jonathon as well, what's it been like from his side of things, and how has he navigated this with his own health challenges.

Both Laura and Jonathon have had more than their fair share of health conditions. Jonathon was born with renal failure and later had a kidney transplant, and Laura has had brain surgery more than once, so they're not strangers deep, difficult conversations.

In this chat, Jonathon shares his side of the 'wig flying off story', how he's managed his own health challenges, how they communicated about their health when dating, how they've found their way in marriage together, and what part faith has played in that.

How this couple are, and see life, despite all their health challenges, is truly inspiring.

Loss 53/101 Episode (Loss of hair through alopecia): https://www.thesilentwhy.com/podcast/episode/7a41eed1/loss-53101-loss-of-hair-through-alopecia-laura-burns

Transcript

Claire : 0:02

Welcome to The Silent Why and to a very special bonus episode.

Chris: 0:06

As you may know, Claire and I (I'm Chris, by the way), are on a podcast mission to explore 101 different types of loss to see if hope can exist in every one.

Claire : 0:14

Last week we spoke to Laura Burns about her experience of being diagnosed with alopecia in her early 20s.

Chris: 0:19

And while we recorded that in person interview, her husband and our friend Jon, who we knew even before Laura came into his life was sat there watching and listening.

Claire : 0:29

Not in a creepy way! So we thought, why not bring him in on the conversation and ask him what it was like to meet and date somebody with alopecia. Plus, we really wanted to hear his side of the week flying off story that Laura told us.

Chris: 0:41

If you haven't listened to the last episode, you probably want to zip back and hear that first, then come with us as we chat to Jon and Laura.

Claire : 0:43

It's worth noting that this is not a couple that have just had to deal with alopecia to diagnosis. Laura's had brain surgery more than once, and Jon, as you're gonna hear about in this episode, was born with renal failure and had a kidney transplant. How they are and how they just see life, despite their health challenges is truly inspiring.

Chris: 1:04

So here we go. bonus episode time. And over to you, Mr. Burns.

Jonathon: 1:11

Hi, I'm Jonathan, I'm Laura's husband. I live in the Black Country in the West Midlands, also.

Chris: 1:17

And this is great to have this conversation with you. Because in the last episode, this is a bonus addition to hearing your wife talk about 15 years of alopecia. So I guess just to get us going you were listening to her talking about that, obviously not a new subject for you. So just being part of that hearing, Laura talking about it with a microphone in front of her, what was that experience like for you as her protective husband?

Jonathon: 1:43

Yeah, quite, quite a strange, strange experience? I would say. Yeah, obviously, I've heard heard Laura speak to me quite a number of times about her experience and journey with alopecia. And now it's sort of not being an easy one. But at the same time, I find it quite difficult to imagine her feeling anxious or sort of worried about those sort of, you know, insecurities, perhaps because, you know, she's such a positive person. So So yes, it was it was quite, it was interesting.

Claire : 2:13

And like Laura said, it's really hard when you're younger, and something happens physically, especially to have that confidence, you'll meet somebody that will love you, despite that. So I think you, Jon are one of the things that every woman hopes is out there is a man that loves you for who you are, I love that you guys have found each other because you're just the most gorgeous couple. And even when you're just talking, Laura's just looking at you with such love and smile makes my heart warm. Anyway, yeah. And you're here with us. And I'm just we're so grateful for you know, your relationship and what you've been able to share, because I know you've had your health issues as well. So Laura has done the same for you as you have for her. So tell us a bit about what it was like I was gonna say when Laura first told you about alopecia but also about the wigs moment that we heard on the last episode when it flew off expecting it. What was that, like from your side?

Jonathon: 2:55

Well, obviously, I known about the wig for for quite a long time at this point. And I sort of there was various times where we spend together where I would feel quite frustrated on her behalf because I had a feeling that she was uncomfortable. I obviously understood, you know, like, wearing a woolly hat all day is not a comfortable thing. And at some point you're gonna get he let alone indoors with a heating on. And so I was kind of desperate for her to sort of take it off and feel comfortable around me that was sort of my, my first sort of feelings around it. And this sort of just how this, it was just a bizarre thing that happened. I think I went to put my arm rounder, you know, I'm realise how smooth I am not. And clearly clearly in doing that, as dislodged the week, considerably, considerably. And it's never happened since I honestly never happened before. And as Laura said, you know, I've been with her, when we've been out walking in quite quite some gales and things like that they they do not just blow off. They're very sturdy. So it was a funny thing. But I remember when it happened, I knew immediately that she'd be upset. And my sort of search thoughts were really to try and reassure her. Because I just realised, and I didn't really know what to say, at that point over then sort of just to say it's okay, you know, I know about this, you know, this is not a shock to me. And, yeah, this is absolutely fine. You don't need to worry about it. And I don't want you to be wearing it in the house and you know, all day with central heating on, but it took a little bit longer before she was able to sort of do that around me on a consistent basis. I'm sure she was sort of checking to see what my reactions were. But I think she sort of realised that it really didn't bother me and it didn't that yeah, that she she was able to sort of be more comfortable around me

Chris: 4:53

Rewind to a time where you didn't know her as well as you did at that point in person. And Laura mentioned the conversation about are getting together first of all meeting online and false advertising. So on reflection, how do you feel like you handled, you know, finding out about Laura, all of Laura in online before meeting in person? How was that experience for you?

Jonathon: 5:15

So I, I've had my own health challenges. Throughout the entirety of my life, I was used to those feelings of insecurity from my own side of things and the worries of not possibly finding someone to accept you. Essentially, when when we exchanged numbers after meeting online, Laura commented on what my profile picture was, and long story short, I had a picture of a supermodel wife WhatsApp profile picture, well, false. Yeah, yeah, exactly. Exactly. And, and she, she asked me a question, why have you got that it's a really strange thing to have. But growing up adult health difficulties, and I was obsessed with Superman, Christopher, even Superman. And I think it was just because he was so far removed from sort of, you know, who was what I wanted to be, I wanted to be Superman fly around everywhere saving the world. This is my sort of, he was my hero when I was a small child. And sort of at a point in my life, I had a kidney transplant, and experienced a lot of difficulties after that. And I remember someone having a conversation with me, who didn't know that I had this sort of obsession with Superman, as a child, who said to me, you know, you can be Superman, you know, you, you can do what you want, you don't need to worry about your health and the anxieties that you feel you have that permission, and the bit of a bizarre statement, but at the same time, it was weird, because they didn't know about that. And so I had this WhatsApp picture. And very early on, I just explained to her a bit, it led to a conversation about my health. I was I was so worried about feeling accepted, that when she told me about her situation, it didn't bother me. I was quite surprised myself that it didn't bother me. I have to be honest. But you really didn't kind of surprise myself and pleasantly,

Chris: 7:12

Brilliant that' really good to hear.

Claire : 7:13

It's that amazing.

Chris: 7:14

Yeah

Claire : 7:14

I think it's what everybody wants, isn't it. And it's sad that you have to have health issues to get to that point, I suppose. But it does often seem to be the way that a lot of people we speak to you, they've been through loss and grief. And that's what's made them more accepting of others or themselves, or they've got this amazing, you know, view of the world and you know, you two are both in jobs where you help people a lot. It's made you very caring, very outward looking probably because of you know what you've been through if you'd been Superman, you might not have done the same job

Chris: 7:44

Talk about the health challenge side of things because for those that don't know us so well, a view of you might be that you are a very manly man, you'd like sport, you'd like beer, you've got a great sense of humour. But then clearly inside there are sort of vulnerabilities and past you've had to come to terms with yourself. So is that been an easy story for you through the years of thinking? Well, you know, I like to do all the outgoing extrovert stuff, but then there is a gentle softer side as well.

Jonathon: 8:07

Yeah, it's I guess it's a complicated answer. I had renal failure from birth. I was born with a polyp on my kidney, found when I was two weeks old. So they had to remove that kidney. And then the kidney I had remaining had something called reflux, where essentially the waste was washing back into the kidney. It wasn't draining through the urethra. And it basically diseased that kidney to the point where it was, it was unsalvageable, it was sort of a swipe. Most of my childhood, I grew up with very minimal renal function. They kept telling me I'd be on a machine at some point in my early teens, however, it lasted till I was about yeah about 18. And then I was quite poorly for two years. And then almost 20 years ago, I had a transplant 2004. And yeah, and ever since then, sort of yeah, I've been living with that.

Chris: 9:04

And so have you found it easy or hard or somewhere in between to be open about your own challenges with people that you meet for the first time or friends that you're getting to know and sort of finding support? And that is a very private thing? Or is it something you're quite open about?

Jonathon: 9:18

I think I am known as being a bit of an oversharer. To be honest, I think I get that from my mother, but I'm very open person, maybe to a fault at times, perhaps I think there are times where you do need to keep things privately and close to your chest. But But generally, I'm quite open to just speaking about my situation I find, particularly when I'm around people and maybe you're experiencing their own difficulties, because I think I think it can really help maybe help with the empathy side of things. Because I have experienced lots of different challenges in life because of my health. So I think it just gives me a really good perspective on life. And when I meet people, and so I'll try and I try and use it positively where I can I

Chris: 10:00

must be a nightmare as a social worker, because you're coming across everyday stories of great need of despair, where you're feeling and empathising, you must carry some weight.

Jonathon: 10:09

Yeah, you can feel like that. I think what Laura said about her her home and being gratitude, I think that's really true. I think I am I am, I I'm quite grateful person in terms of, I realise, life could be a lot more difficult for me if I had a certain perspective. But because I think I'm quite grateful person also, and sort of try and see the positive and humour in most things I try. And I try and bring that positivity into the situations that are going to be those difficult, you know, when when, when you walk into situations that are particularly sort of dark or, or bleak, maybe,

Claire : 10:49

I think, a lot of people out there who, who find it quite scary the idea of meeting somebody, when you've got to explain your medical history, or you've got things going on physically, that you need to tell them about, what would you want to say to people who are in that place, and what has sort of helped you in your relationship in your marriage, when it comes to sort of navigating these things together?

Laura: 11:07

I think maybe what you initially said, so humour has been very much part of our regular conversations, when there's been different health challenges. Just trying to sort of see the lighter or the funny side, even in really difficult situations. I think that has been both of our defaults before we met each other. And so then it was kind of natural that we would sort of continue with that,

Jonathon: 11:32

I think really just sort of not been scared to actually have those deep conversations with one another. I think, when you when sort of anxieties arise around health, I think it's important that you don't let those things get a grip with you. And that you do you have those people around you who you can go and speak to, I think there was certainly a period in my life in my 20s, where I perhaps didn't know how to deal with some of the more difficult feelings. And I would maybe shut myself away, and sort of hide behind sort of distracting myself with various things, computer games, or just, you know, mechanisms of distraction. But actually, they weren't helpful. And so now, when we have maybe difficult times, or challenges with our health, we, we do talk about those things. And then maybe after we've processed those things together, we do then sort of sort of see maybe it does feel a bit lighter. And then the humour comes along, you know, after that, what

Chris: 12:29

you said at the start there about not being afraid to have those deeper conversations claiming to be married now for when it goes get the finger wrong, but it's some 19 years. And I still find that and we love deep conversation. But I still find at times, I really have to almost like okay, we're going in this isn't going to be easy. It's going to be a bumpy ride, but I know the other side of it, I know for sure it will be a good thing to do. But it's never fun in the process. Is it something like this, sometimes it's not fun in the process that you make yourself, have those conversations, realising that this is going to be healthy for us, and will feel lighter at the end. So it's remarkable that, you know, you're able even quite early on in your marriage, that you're both realising, get over the fear of having this conversation because it will, it will do as good.

Laura: 13:12

I don't know if that's even necessarily been a choice. I think we've probably because it's something that we've lived with sort of once a month, and different things have even happened in the last year and a half in terms of our health, you kind of you can't really put things off. So sometimes what it's like so at the forefront of your daily life, you sort of have to have those, those conversations, but as you say, once you have, like, you know, been open and discussed, then you know that it's well worth it in terms of when you've got to the other side, that you do get a lot closer you do build up trust. And yeah, it does really just help to build your marriage really.

Chris: 13:47

Marriage, then Jonathon, for you. And I use your full name 'Jonathon', like Laura does, rather than calling you Jon. I mean, one of the things that well, two things that stood out from your marriage that we had the joy of being at your your wedding, on your wedding day being at the ceremony, being at the reception, hearing the speeches that there was this this common theme of humour and gratitude, just how thankful you both I think it came across certainly in your speech, Jonathon, nearly said Jon, but also, you know, your friends and family that that spoke that we met that did speeches as well for them, they was sort of so thankful for the both of you to find each other because of what you're able to do for each other, which was just lovely for you, then in your marriage. What's sort of your vision, what's your hope for the future of this is who I want to be in my marriage as a husband is a big question. But do you have like designs on this as the person I'm wanting to be in spend everyday being more like this or how does that work for you?

Jonathon: 14:44

Yeah. I think the thing that I want the most in life for my marriages. So if I if I kind of flip that question slightly, so I always wanted someone in my life who could support me and be there To help help push me on in life and help me sort of see my dreams and visions come to pass, but I desperately want my wife's visions and dreams and hopes to come to pass also. And so, so my goal is a husband, and what I hope I can do, and hope I'm I am doing. Yeah, I want to sort of be, I want to be Laura's biggest cheer person, if you like to sort of see her fulfil her hopes, dreams and ambitions in life, you know, and to help us to achieve those things. That's what I want to do.

Chris: 15:37

Brilliant.

Claire : 15:37

This is where I give you a cheeky side glance. You listening?

Chris: 15:40

We need to work on that.

Claire : 15:42

Chris is my biggest criticiser...

Chris: 15:44

And cheerleader.

Claire : 15:47

And cheerleader.

Chris: 15:48

It's called constructive criticism.

Claire : 15:50

Yeah.

Chris: 15:52

Great. Knowing the pair of you, as we do, you know, we've talked about hope and love. But faith is such a major element as well, for you both. There is something much bigger at play in your lives in your marriage individually. And together. Is it possible just to summarise what having a shared Christian faith what difference that's made for you together? And individually?

Jonathon: 16:10

I think certainly, before we met, it was probably for me, it was the most important thing, I wanted to find someone who shared the same faith as me. And so that was quite important that, you know, Laura went to church, and we both believed in God. And I'll certainly say that for myself. And for both of us that sort of, we we glean a lot of hope from our faith. And we feel that God sort of forms the foundation of our relationship as for our life, and so if we just found that through through our faith that we've been able to sort of tackle so many different hurdles, that perhaps would be so much more difficult without that faith. So yeah, so it's fundamental, really, and important to us.

Laura: 16:47

I think, sort of having health conditions makes you realise that you're not always in control that you're not infallible, and you're kind of need for something beyond yourself. And I think, sort of trusting God through these different sort of challenges has been huge for us. So just knowing that actually, we don't need to be in control, we can trust that he has the best for us, and that he could bring us through things. And yeah, just sort of having that belief that it's not all on us, I think has been a huge source of like, comfort and reassurance and just sort of taking that pressure off.

Chris: 17:25

Sometimes the faith you talk about is criticised as

Laura: 17:25

Yeah, I think it just brings a different perspective, being a crutch. But it's almost like Yeah, and we need that and we want it to it's our choice to have that support, to have faith to have hope, love sort of from having. doesn't it because we're, you know, we're all human, we've all got different issues. And for us to assume that we can just sort of do everything in our own strength. I think it kind of when you have health problems, just proves that that's not always possible. And so it just Yeah, brings about that, that need for Gordon in our lives.

Chris: 18:06

So there you have it. Thank you, Jonathon, and Laura for talking so openly about how you navigate the curveballs that life throws at you.

Claire : 18:13

And thank you for listening. We're so grateful for you, not just because you listen to this podcast, but because, if you are, you're trying to learn about grief and loss and you're interested in the stories of others. You know the power and the impact that testimony can have on the lives of others, and that makes you very special. I spoke to someone the other day for an hour I learned a lot about them, lovely person, but they didn't ask a single question about me. It's sad that too often these are the people we meet in life. Let's not be these people. Let's ask about people's lives. Let's have conversations like this one in-person. Sometimes it can literally save lives.

Chris: 18:45

Maybe you know someone that's struggling right now. Maybe it's a health issue, a financial one, a relationship breakdown, job stress, parenting, anxiety, bereavement? Well, we have two brilliant ideas to help you practically with that. You could share an episode with them, show them a story of someone else going through something similar, so they know they're not alone, and that you want to help, or you can send them a Herman and there's more about all of that on our website, www.thesilentwhy.com Now we're finishing this episode with a quote from the artist and poet Bridget Nicole.

Claire : 19:16

"People who love you for who you are and not for what you can do for them are the best kind of people."