Loss 53/101: Loss of hair through alopecia: Laura Burns

#105. What's it like to suddenly start losing your hair at the age of 22? How open should you be about it when start dating?

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.

Loss #53 of 101: Loss of hair through alopecia

Meet Laura Burns, a social worker for an anti modern-slavery charity, but also a friend of ours who lives in The Black Country. Laura married our friend Jonathon in 2022, and we had the privilege of being at their wedding.  

This is only our second in-person interview, after nearly 200 podcast episodes! So it was very exciting to chat face-to-face with Laura in our podcast studio.

Alopecia first appeared in Laura’s life in 2011 when she was 22 years old. Alopecia areata is a disease that happens when the immune system attacks hair follicles and causes hair loss, and Laura explains the different types and which ones have affected her over the years. 

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. But it was only recently Laura told us she has alopecia, so we asked if she'd come and tell us about her experience, and she agreed. This was the first time we were hearing her story, so it was a real honour to record it for the podcast to share with you.

Laura talks about what kind of loss alopecia is, the journey to finding the right wig (pop over to our social media to see how gorgeous that is!), how she found the right man 😉, and how it's not always been easy to know what to share with others and when.

She also shares some of the more humorous moments, e.g. when her now-husband Jonathon first saw her without her wig - well worth tuning in for.

This is a very honest conversation about a very visual and complicated loss, especially because identity can be so closely connected to our hair. Laura shows us how hope can find a way in and how important gratitude has been to her.

For more information and support with alopecia: https://www.alopecia.org.uk/

PLUS: Tune in next week for a bonus material episode, because after this interview we recorded a chat with her lovely husband, Jonathon Burns. 

Transcript

Laura: 0:02

Hi, I'm Laura. And I'm here to talk about hair loss through alopecia.

Claire : 0:08

Welcome to The Silent Why a podcast journey to see if hope can exist in 101 different types of loss and to hear from those who have experienced them. I'm Claire Sandys. And this is my husband, Chris.

Chris: 0:18

And in this episode, we're chatting to a friend of ours in-person. That's not her name!

Claire : 0:23

Yes, it's only the second time we've recorded anything in person. So this is a very lovely change for us.

Chris: 0:29

In an unusual twist this episode comes with a bonus.

Claire : 0:32

Bum bum baaaarm.

Chris: 0:33

You'll have to wait till the end of the episode to find out what that is.

Claire : 0:37

Anyway, back to Laura Burns, who is a social worker for an anti modern slavery charity, and she lives in the Black Country. Chris, what is the Black Country?

Chris: 0:46

Thanks. It's in the West Midlands of England. It was actually one of the birthplaces of the Industrial Revolution, sometimes referred to as the area where the coal seam comes to the surface. So basically, high levels of certain air pollution led to it being called the Black Country back in the 1800s.

Claire : 1:04

And what is the coal seam?

Chris: 1:07

Gee, thanks, onwards.

Claire : 1:10

Always good to throw a bit of history in there, even though it has nothing to do with our guest. But that's where she lives at the moment.

Chris: 1:15

Laura started dating a friend of a friend of ours, the lovely Jon, and we've got to know them as a couple over the last few years and then had the privilege of being at their wedding in 2022.

Claire : 1:25

And this couple have had more than their fair share of health complications from Jonn being born with renal failure and later having a kidney transplant. And Laura having had brain surgery more than once in the last few years. But it was only recently that we also found out that Laura has alopecia. Her wig is amazing. And we hadn't realised this was something else that she was dealing with. So as she's such a friendly, open person, we asked her if she'd be willing to come and chat to us on the podcast about what it's like to lose your hair. And she said, Yes.

Chris: 1:52

It was nearly 15 years ago, when alopecia first entered Laura's life when she was in her early 20s.

Laura: 1:57

Shortly after all the hair on my body fell out. So it was quite a sudden thing. I didn't really know what was happening. So it was quite a shock. And quite scary at the time, because it's such a visible condition.

Claire : 2:11

Laura told us about the journey she's been on as she found her way with alopecia, but also how it's not always been easy to know what to share, and when, with others.

Laura: 2:18

When I actually transitioned to decide, I'm going to start wearing a wig. I then felt like the wig was very obvious. And so I felt a duty to tell everybody I met. So it was quite strange, really. But I always felt like oh, I'll try and get this into a conversation when they probably weren't really thinking about that. But I assumed it was the elephant in the room.

Chris: 2:37

She also shares some of the more humorous moments, one of which is when husband John saw her without her wig for the first time.

Laura: 2:43

And we were sitting on the sofa one day, and he just moved his elbow in one particular way...

Chris: 2:49

You'll have to keep listening to hear the end of that story.

Claire : 2:52

This is a very honest conversation about what can be very visual and a very complicated loss, especially because identity is so closely connected with our hair quite often. But Laura shows us how hope can find a way in and how important gratitude has been to her.

Chris: 3:05

So let's get into it. We started the chat by asking Laura to tell us a bit about herself, then what an average week looks like for her.

Laura: 3:15

Hi, I'm Laura. I am currently living in the Black Country in the West Midlands, with my husband, Jonathan. And I'm a social worker with a anti modern slavery charity. So I work with survivors of modern slavery to help them to get the right legal advice and support to be able to move forward with their lives. So yeah, my work takes up quite a lot of my week. And then outside of work, I like meeting up with friends for coffee, walking to a min. And yeah, every week looks quite different. Really.

Chris: 3:47

Thank you. I mean, we're delighted that you've agreed to chat to us on the podcast and in person as well. It's great to be here, which is brilliant. Because this is only the second time that we in how many 150 odd episodes that we've done, that we've actually been able to speak to somebody in person, which is lovely, and makes a big difference. So thank you for that. And you're not done this before. So we're really, really grateful. You're willing to come and chat to us thinking

Claire : 4:12

yeah, and we know you like not just as a guest, but we know you as a friend as well. Laura is actually the friend of a friend who are both called Jon, lots of Jon's in our connections. So we've known you for a while, it's safe to say that you've both had your fair share of health complications along the way. But you very kindly come to chat to us about something that you went through in your 20s which was discovering that you had alopecia. So why don't you tell us a bit about what alopecia is and how you found out that you had it.

Laura: 4:38

So alopecia is a autoimmune condition. And your immune system is there to protect you against infections and diseases. But sometimes your immune system can sort of attack itself and in the case of alopecia, the immune system attacks the hair follicles, which then causes the hair to fall out. So There's different types of alopecia. The first type being alopecia areata, where you'd get patches of hair that falls out. And then there's alopecia totalis, which is where you lose all hair of your head. And then alopecia universalis, which is where you lose all hair from your whole body. So including sort of eyelashes, eyebrows. So yeah, those are sort of the main types of alopecia. For me, it happened really quite suddenly. So I do have some other like autoimmune conditions that eczema and asthma and so apparently I now know, that alopecia can sort of you know, is within that family and can also happen, just returned from six months of backpacking. And so being in lots of different countries, sort of, you know, all different environments, where you might think if you're going to have something like sudden hair loss that might happen there. However, that wasn't the case, it was, as soon as I got back, after about a month, my hair fell out within the space of two weeks. So quite suddenly, I was 22 at the time, so like, quite young. And initially, it was the hair on my head that came out. And then shortly after all the hair on my body fell out. So it was quite a sudden thing. I didn't really know what was happening. So it was quite a shock. And quite scary at the time, because it's such a visible condition. And then thinking sort of what do you do in that moment, initially, like think I had a lot of questions and just was trying to appear as normal as possible by using different hairstyles and trying to sort of cover up as much as possible. But that was quite a short lived thing, because it just was falling out so quickly.

Claire : 6:38

And especially that age as well, it carries such a big deal when you're younger. And I think we can forget that as we get older, sometimes how big it is, you know, you get a bad haircut when you're young, and it feels like the end of your world. So there's a lot going on there. What were the emotions that you were kind of going through when that was happening?

Laura: 6:52

I think, probably a lot of fear about why this was happening. And when would it come back? And I think maybe don't really think about it, but like part of your identity is in your hair, especially as you say, as like someone in their 20s. So I just always had long blonde hair. And that was just part of me. And so then it felt like just losing a part of yourself. And that kind of fear that people would then see you differently, or treat you differently. So yeah, just a lot of kind of, I guess fear and uncertainty. Were probably the main feelings at that time.

Chris: 7:27

Can I pick up on what you say about that initial thoughts around when it will come back over whatever space of time it may have been? Did you always think when? Or was there a point where you had to put f into that as well?

Laura: 7:38

Yeah, I think initially, because it did come out so quickly. I just assumed it would probably go back so quickly. And no, that might seem like a strange sort of way of rationalising. But yeah, I just kind of assumed it will be a short term thing at the time. And then I did go to see a dermatologist. And they said, there's no real sort of medication or cure, and it's very different for each person. And it may come back it may not. So I think then that made me sort of question Oh, what if? Actually, I'm one of the people where it my head doesn't return? And what will life look like there? So I think that probably changed my perspective of sort of assuming it would come back when I had that appointment.

Claire : 8:19

It's a tricky loss, because it's, it's a physical loss. And we spoke to somebody recently who lost their arm. And there's no hiding that, you know, you see someone with one arm, you have to either talk about it or ignore it, it's very obvious. But with this one, there are ways to sort of hide it. And like you said, you're trying to do different things. So it's a difficult one, because you must have to decide who you tell. And when you tell what if you tell anybody. And you must be wondering, are people wondering about this? So how did you go about talking to others about it? Or did you not really talk about it?

Laura: 8:45

I think when my hair first fell out, I did talk about it quite a lot, because I was trying these different styles. And I almost felt like I needed to explain why I was doing so many different things. And then when I actually transitioned to decide, I'm going to start wearing a wig because there's not really anything left and the need to sort of accept this. I then felt like the wig was very obvious. And so I felt a duty to tell everybody I met. So it was quite strange, really. But I always felt like oh, I'll try and get this into a conversation when they probably weren't really thinking about that. But I assumed it was the elephant in the room that I needed to just sort of let people know about. So that was early on. And then as the years have gone by, it's become more normal to me, I guess. It's not something that I think of at the forefront of my mind when I'm meeting new people. And I don't assume that people think about it or need to know in the same way so it's now only really if it comes up in conversation that I would sort of talk about it with new people.

Claire : 9:48

So did it feel quite lonely at that time because I know we've spoken to you and you've said since then you've discovered there are now podcasts about it. Obviously there's social media, how did it feel sort of pre all that happening?

Laura: 9:58

Yes, it did feel quite Like not sure sort of where exactly to turn initially. So once you've had the diagnosis, there isn't really well, there's kind of some treatment that you can try. But you're not really under a, an NHS service for sort of like the emotional side of, you know, support. And so I did find that one charity that was around at the time, I remember was alopecia UK. And there were local support groups. So I went along to one of those. And they were really great because it was other people who had had similar experiences to me. And they did not just talk about things, but they also brought someone in to do like Indian Head Massage, or reflexology, or just sort of some tips on how to draw eyebrows. And so it was quite practical as well. So yeah, that was like, quite helpful. And then I was just sitting next to someone in my office at the time, who had previously had alopecia, which was quite unusual, because I've actually never come across anyone, since who kind of in regular, like day to day life that that has it. So yeah, that was really helpful to have that lady at that time. But with the sort of advancements of social media, there are a lot more podcasts nowadays is like Instagram reels. There's a platform for regular people to share their stories and their sort of tips and advice around, you know, just how to do makeup, or different sort of wigs and things that you can get. And I don't think that was really the case, sort of when my hair first came out. So I think, yeah, it's nice that the there are a lot more things that you can sort of tap into nowadays.

Chris: 11:33

The social media stuff is really helpful. Definitely. Lots of pluses to that. But then individuals, may you still find that behind closed doors in private that this, they still have to process and come to terms with, you know, whatever it is, they're dealing with their own personal and private challengers. Have there been particular days seasons act, things that have been that was hard, you know, on reflection, looking back over those years? Yeah, this was definitely the hardest time of the things that you can identify as being challenging.

Laura: 12:02

Yeah, so I think when my hair first came out, and I got my wig, I then felt like, Okay, this feels like, you know, feel quite normal again now and wearing this. And I can almost like, hide what's happened, I felt quite safe wearing my wig out in public. I felt like, oh, I can blend in here. But I did have a fear of, oh, no, will someone bump into me and it'll come off? Or what about if I'm out in the wind, or what about if I want to go swimming or sort of those kinds of different types of environments, I felt like that was like, more difficult to navigate. And I think it did really feel quite anxious at times, because I just wanted to sort of blend in. And I didn't always feel like that was so possible. Even things like if someone gives you a hug, sometimes like the pull the back of your hair. So I would hug people like with my hand on the top of my head, just to make sure that sort of nothing was at risk. And then I think also, I was living in different cultures at the time. So I didn't really want to take off in the house. But it could get quite itchy. So that wasn't really the best for my head or just comfort. So thinking that was quite difficult to feel comfortable and sort of accept what had happened.

Chris: 13:11

Much of that sort of that you've learned is that just through your own time and experience, or some of those places like alopecia UK, you know, did you go there for reassurance that no, your wig won't blow off in the wind? Or how did you become comfortable with and assured that you know, the things that you were fearing wouldn't happen?

Laura: 13:32

So I actually met a lady in a wig shop who is so kind, so compassionate, so experienced. And she really kind of helped me to understand how best to wear the wig and how like versatile and durable it was. And I think probably speaking to her and her kind of Yeah, explaining how many people she's worked with, and how little sort of incidents, and I guess there's been, I think she really helped me. Yeah, and I think also just experience of, you know, you're sort of out and about, you're nothing terrible is happening. And then you build that confidence that actually, maybe it's okay, we start with anything new, I guess you just it's a bit of a trial and error, isn't it and you feel more comfortable as time sort of goes by,

Claire : 14:15

I feel like that must have been a real journey, especially the wig side of it. And we didn't actually know that you had alopecia. So we've known you for a while and your wig is amazing. There's no I would say there's nothing about it. That even suggests it's a wig. So I was quite almost really surprised when you told us. But that can't have been where you started with the journey. I'm sure that you've you've had to try different things along the way. Has there been a journey with the week where you've started somewhere and then thought I need to get a better one or I need to get a more comfortable one or what's sort of the practical side been like?

Laura: 14:45

So I've gone for some different styles over the years. I even went for a different colour at one point because at one stage I thought I'll embrace this opportunity to have completely different style that my hair doesn't grow in a particular way. So I've always had synthetic hair so you can get real Aha. But it is very expensive. And it's not something that you can get on the NHS. So it was quite comforting and reassuring that actually synthetic is quite realistic. And you just need to make sure that you're sort of looking after it. And yeah, upgrading every few months. So I think I'll mainly wanted to choose a word that was the same or near ish to my natural hair. Because as I said earlier, it felt like part of my identity, and I just wanted to sort of blend in and be kind of as I was with my natural hair, but on my wedding, I actually had real hair. So I bought kind of one that I could then style, because that was something that I thought about, like, Oh, don't want to just have exactly the same style as every other day. Because on your wedding day, you want to sort of something a bit more interesting. So that was nice to be able to have sort of something a bit more special. At work. Yeah, so it was the exact same colour as, as my year sort of synthetic hair. And I don't think anyone would have necessarily No, and they probably just thought I killed the other half. Yeah. So yeah,

Chris: 16:00

I'm glad you mentioned your wedding. Because in part two of the conversation, hopefully we're gonna get to speak to your lovely husband, John. Yes. What on earth? Was it like dating, meeting someone for the first time and knowing how do you raise this? How do you talk about this and other bits as well? And then you talked about having other autoimmune conditions? Yeah, nerves, anxiety, fear, or we're completely fine with just like meeting a guy meeting John and being like, Hey, this is me all of me.

Laura: 16:32

Yeah, I think that was quite a big thing, not knowing how someone would react to kind of explaining that I look one way, but actually, when I take my wig off, I look quite different. And knowing whether that would put someone off would know and whether they would still be attracted to me. So yeah, I think that was a really big thing. And I remember actually, one person told me,'Oh, if you're going on an online dating site, and you're, you know, not telling people that you wear a wig, it's false advertising'. And then I thought, am I going to have to like, put a little disclaimer on here.

Chris: 17:09

I love that you've'advertised' yourself.

Laura: 17:12

So I didn't want to do that, obviously, though, definitely was quite nervous about sort of explaining that and sort of it being understood or being accepted on. So it did sort of make me think, when do you raise this question when dating? Like, do you get out the way straightaway? Or do you wait until someone knows you well enough to not be like freaked out by that? So when I met John, we actually met online. And before we'd met in person, I had a conversation with him on the phone, and basically told him before that, you know, this was the situation. And his reply was no problem. That's fine. But I did think, well, he's not going to say anything different disease. So I thought the relay will only know when I show him in person, like when you know, actually take my wig off, and whether he still feels the same, because it will be quite mean to just sort of stop speaking to someone after that. And I knew we wouldn't do that. But I guess it also does sort of show the character of someone if they are put off by something that's quite superficial. So it was quite like a definitely more nerve wracking process to just regularly dating because I felt like I had this like, almost like a secret that had to get out at some point.

Chris: 18:25

I feel like I shouldn't know the answer to this. When during a normal day or week, are you without your wig without hair?

Laura: 18:32

So...

Claire : 18:33

Hang on. Why would you know the answer to that?

Laura: 18:34

Yeah. I was thinking that!

Chris: 18:35

I can't assume anything. Sometimes women just know things! I'll rephrase this. So when during a normal day or week, are you without your wig without hair?

Laura: 18:48

Yeah, so it can get quite itchy. And it can be a bit like wearing a woolly hat all day. So often, when I've finished work, and I've got home, I will then take it off, then I used to always wear scarves or like hats in the evening instead. But now I don't really unless it's particularly cold in winter. So yeah, mainly just in the house, when I know no one's visiting, I would just take it off.

Claire : 19:12

For people listening who maybe are going through this or in the early stages of it, especially if they're young. How do you feel now when you look at yourself without your wig on? Has that changed over the years?

Laura: 19:22

I think probably when I first saw myself without a word, I think I was like, just felt in denial. Like I didn't really want to look in the mirror. Like it was like it didn't feel like me. Whereas now as the years have gone by, it feels very normal. I feel like I look at myself and think Yeah, you look good. Like it feels you know, just you just sort of I don't know get used to it and maybe see yourself in a slightly different light. So it feels quite normal for me to see myself with or without the wig. And a lot of people actually say I've got very nice head it was a strange compliment but when I was around friends initially without they would say I was in your head. So nice. I was in like such a good shape. And it was just like a strange thing to say. But yeah, I don't know, it was, I guess helped in some complimentary way.

Claire : 20:09

Yeah.

Chris: 20:10

And were there things that John did, or John said that really helped in that sort of reassurance theme.

Laura: 20:17

Yeah, I think probably initially with him not being fazed by me telling him and then sort of later on money did see me without my hair, you know, he was exactly the same. There wasn't like a shock. There wasn't a sort of there couldn't read anything subtly underlying that was like thinking that he was feeling an indifferent. I think that probably helped me feel better, and just helped everything feel more normalised. Yeah. So I think just that kind of acceptance and sort of feeling attractive with or without it. Yeah, really, sort of helped made a difference.

Claire : 20:54

I think that's really encouraging for people listening, if they are scared about getting into relationships, and how are people going to feel I feel like how you've done it seems to be like a really wise way of going about it, you tell people up front, so you didn't have to worry about two, three months down the line? Do I need to tell them? How do I do this? So you knew up front, if they were interested in being with you, you've kind of you've been honest about it, and you've met somebody who's encouraged you in it. And I just think that's a really lovely kind of story of hope that you can meet someone who loves you for who you are, it doesn't matter to them. And you can feel better about yourself as well as the years go on. And I think that really helps when you meet somebody who affirms that. So I like to hope that would encourage people. Yeah, worried about that.

Chris: 21:32

I'm glad you pick up on hope. Because I think there's a whole bit we can talk about in terms of hope. I don't think we mentioned this earlier on, because when alopecia arrived in your life, there was a spell on your hair grew back, and you must have thought then hallelujah. But then a while later, you'd lost it all again. And it hasn't gone back since that time. What was that? Like in terms of thinking? Is this it is this the sort of the healing, the miracle is this the the testimony of I did have alopecia and now it's gone. But then you had to overcome the loss of your hair a second time.

Laura: 22:04

So the second time I had alopecia, totalis, not alopecia universalis. So that was that I just lost the hair on my head, not long hair on my whole body. So it was a shock. And it was disappointing. But I think it felt slightly easier because I had eyebrows and eyelashes. And those are the things that were quite difficult for me to lose because your eyelashes protect your eyes from vection. And even just things that have a nose hair not having that your nose becomes quite watery. And you know, not having eye brows, it can kind of change the look of your face. So I think for me, probably initially, those are some of the most difficult parts. And then when I lost the hair on my head, it was you know, I would much prefer to have had it, but I was still quite thankful that I had, those are the things. And I think there was maybe an element of I've been through this before, it's not so much of a shock. I kind of know I've managed Okay, in the end once I've adjusted, and I can do it again. Obviously I wanted it to just remain but it wasn't such a big thing. The second time, I would say.

Chris: 23:11

you mentioned that in the start the conversation about the the when or if. So where are you now? Are you living as though it won't grow back. But if it does great, or I'm hoping that it will grow back.

Laura: 23:22

So it's been five years now since I've not had any hair on my head. And I think yeah, just just feel quite normal. So I would still like it will be brilliant if it did go back. But I don't feel like I'm waiting in May with the same way as I was. I felt like it would be a bonus rather than this has to happen. Or I've sort of lost a part of myself for good. It's almost like a new love a different level of acceptance, I guess of kind of what the current situation is. And

Chris: 23:52

Why do you think that's changed? I'm no longer waiting now as I was.

Laura: 23:56

Maybe because it I've sort of not had her for so long. But I think it has probably made quite a difference that I'm now married. And one of my fears was, will I meet someone who will accept me and be attracted to me without her? And I think now that's not a kind of consideration, that probably does make quite a big difference.

Claire : 24:17

What stories have you got of how other people have reacted to it? Or have you had any comments that have been positive or negative?

Laura: 24:24

I think yeah, all positive. I can't think of any one who's been particularly negative. I think generally, because I didn't really have a time when I just chose not to wear hair at all like a week at all. There was more sort of compliments around the week that I was wearing. A lot of people often didn't know it was a wig. I had one lady in my office who came up to me with a pen and paper and said Oh hairdresser did you go to because I like the same style as you. And so those sorts of moments when you think this one put you up to this but actually she just genuinely wanted the same style and and so that was really positive reaction, or just people in the street as sometimes still get that now when people say, oh, like the colour of your hair or your style, you know, things. And so that's quite like reassuring. And then yeah, family and friends have always been very sort of supportive on the journey. And I think we all have our own, like, insecurities that we're more aware of, because our own and everyone has their own things. So I think we can make certain things a bigger issue than maybe what other people perceive them to be. I think even just speaking to some of my friends who have Afro hair, and they're, it's so normal for them to have wigs and weaves and it's just not a taboo or an issue or seen as like unusual. And I think that sort of can feel like it sort of normalises everything a bit more as well.

Claire : 25:47

Have you ever been to any stages of asking why we ask all our guests if that's been something they've had to wrestle with? At any point? Did you ever have a sort of a why me? Why am I going through this kind of stage?

Laura: 25:56

I don't think I necessarily thought Why me? I did think why is this happening, but not why specifically to me, I'd had sort of health problems as a child. And so I was quite familiar with sort of health not always been a given. And I think I did sort of have a determination for it like not to defy me and not to hold me back. And I think it probably gave me more of a drive to not make it something that would stop me from doing the things that I wanted to in life. One of the things

Chris: 26:27

I think of one of the things that hearing your story reminds me of his in our own story of childlessness, because we're quite open people. Clearly we love podcasting, we love talking about our sort of our own circumstances and trying to help others. But we've had to learn actually, not everything needs to be shared, then we were to open the start. And then part of certainly Claire's journey was learning. I don't have to tell everybody I can keep some of this private, has there been a elements with yourself of actually, I don't need to share, you know, the parts of this I can keep just private between myself and John or just yourself rather than feeling like I need to be open. I need to be an ambassador for alopecia. I need to tell people proactively

Laura: 27:09

Yeah, I think probably early on, I felt more of a need to tell people, because I kind of assumed that they would notice quite a difference in the way I looked. And I was having lots of conversations of explaining even what alopecia was. So there was just lots of the same conversations, a lot of questions. So in a way, I guess it was kind of raising awareness of it as well. And then over the years, I think, because it's not been so much of a sort of frontal sort of focus on my life, I haven't really had the same conversations with sort of people who are don't know very well, I would only really mention it when I felt like it was needed. So for example, if I went to a spa with someone who had hadn't told, but I'm not gonna be wearing my wig in the spa, I'd mentioned it then. But I wouldn't just sort of explain it as something about me when I first meet people. I think it's important to not feel like you have to justify anything to people around like health or sort of over explain. So yeah, it's more or no kind of need to know or it comes up in conversation like, definitely, I'm open, but not in a kind of telling everyone, it has no real reason to tell. Would you say any good has come from having alopecia much quicker morning routine? So I think, yeah, very low maintenance, it's quite easy to just always feel that you don't have a bad hair day in terms of the wig looks the same. That is quite a practical and quite quite useful. I think, yeah, maybe just building resilience in general. And yeah, feeling like maybe it looks don't sort of define you as much as what I first thought.

Claire : 28:52

And what's your journey with hope been like throughout this is that something that you've as featured at all that you think about much?

Laura: 29:00

Very much depends on where you hope comes from? So if my hope was in one day, my hair returning, I think that will be quite difficult to maintain that level of hope over the years, because you're not seeing any changes. But I think my hope is more being around, not letting this define me not letting this hold me back. Having hope in lots of other things, and then think that gives you a greater perspective. And yeah, makes kind of the thing that you maybe feel more insecure about or that that loss kind of gives us a different perspective.

Chris: 29:33

Where do you think you'd be without any hope?

Laura: 29:35

So some people I did meet at like their support groups in the early days, I noticed that the alopecia had really affected them to a point that they struggled to go out the house, they struggled to engage in normal activities, and it really held them back. And so I think I sort of saw that loss of hope and really realised I didn't want to let this define me or hold me back. So I think you sort of let that fear get too much, then you would have that loss of hope. And then it would affect every area of your life. So

Chris: 30:05

One of the questions I think I'd love to ask. So alopecia came along for you about 15 years ago 2011. And here we are now in 2024. If you could do some sort of little Magic II thing and go back and say something to the EU of 2011, would there be like a headline or a main topic that you'd want to offer to you 15 years ago?

Laura: 30:27

I think it would probably be like, don't let it hold you back. Don't let it define you. Because I think those are the major risks with something like alopecia, I think I would just want to make sure that it didn't stop me from from doing anything.

Claire : 30:43

And I know that you've mentioned, as a side note to us, so otherwise, it'd be a weird question for me to ask that there have been some humorous moments as you've been through this journey. So have you got an example of some of the things that have made it more funny?

Laura: 30:55

I think one of the most unexpected moments was when I was deciding whether to sort of show Jonathan hair without my wig on. And I was putting off for so long, didn't know how to do it. And we were sitting on the sofa one day, and he just moved his elbow in one particular way. And the wig went fly and into the room into the middle of the floor. And I was mortified, and so shocked. And he was quite shocked as well. Because in however many years over 10 years, nothing like that ever happened. And no, not even small mishap. So this was very extreme. And that was the reveal. So...

Claire : 31:39

Wow. Talk about ripping off the plaster!

Laura: 31:41

So we both like ran to the middle of the room to try and pick it up and then I just like put it on my head quickly. And like started crying because I was like, oh, no, this is not what I had in mind.

Chris: 31:51

Claire asked for a funny story, that sounds traumatising!

Laura: 31:55

It is quite funny now, looking back.

Claire : 31:58

Wow.

Laura: 31:59

And yeah, then after that, it was like, Okay, right, you see my head now. And he's still the same. He's not changed our bills or his opinion. So then that was like, quite reassuring. But it was just yeah, quite funny. I've never had that before or after I've hopefully never again

Claire : 32:15

Of all the ways you must have pictured that happening.

Laura: 32:17

Yeah, not like that.

Chris: 32:20

The two of you mean, one of the many things we really like about you as a pair is your senses of humour. I mean, this is the longest you've spoken probably without laughing. I think it's this sort of serious, deep conversation. But yeah, I can, I can imagine there are many moments, just the two of you at home where something's done or said that you both sort of fall into laughter or whatever. So yeah, you can lift each other up with humour.

Laura: 32:43

Yeah, I think that's definitely our sort of survival technique, like seeing the funny side and things. It really does work wonders. And I think we both have very similar humour. And yeah, default to sort of seeing the funny side in many different challenges.

Chris: 32:57

Well, there'll be a part two to this, which will be a shorter conversation with Jon will hear His side of things, how it felt for him when your wig flew across the room. But to end this conversation, thank you for being willing to talk about it, as you have done has been great, but to finish this conversation, what's your Herman?

Laura: 33:15

So I would say my Herman is gratitude. So gratitude is more than just being thankful when things go well. It's an attitude of appreciation under any circumstance. So I think there's always things that we can have gratitude for. Sometimes we might feel like we have to dig deep for those things. But I think when we choose gratitude as a mindset, this then affects our attitude helps us with perspective, and helps us to ride the ups and downs of life.

Claire : 33:50

Gratitude, the more I do this podcast, the more I understand how much of gratitude is a choice. It's not something people just have more of than others, we can all make the choice to be grateful for what we have, because we all have something to be grateful for, like I quoted in the episode last week, 'if you have nothing to be grateful for, check your pulse'.

Chris: 34:08

A big thank you to Laura for chatting to us and sharing her experiences and wisdom. And as we hinted in the intro next week, we've got a bonus episode for you!

Claire : 34:17

Dun dun duuuun.

Chris: 34:19

Why is that so sinister?

Claire : 34:20

I don't know. It's more upbeat.

Chris: 34:23

(trumpet noise)

Claire : 34:24

That's better. What you won't have known was that Laura's husband Jon was quietly sat listening while we recorded her episode. And afterwards, he also agreed to chat with us about his perspective on meeting and dating and marrying somebody with alopecia.

Chris: 34:36

So we recorded a short bonus episode with him, and that'll be going out next week. He shares what it was like in those early days of romance, and how they both chose to share their own personal stories of trial and challenge so early in the relationship.

Claire : 34:51

You'll also hear how he reacted to Laura's week flying across the room, how he's managed with his own health issues over the years and the huge part that face good communication and humour plays in their marriage.

Chris: 35:00

As for Claire and myself, you can find out all about who we are and what we do through our website which has links to us on social media as well as our own story of being childless, not by choice, a full list of our podcast episodes, how to listen to a podcast and where, blog posts, and of course information on what Herman's are- www.thesilentwhy.com

Claire : 35:20

Yes. And if you follow us on social media, I want to say a huge thank you. It's not just about numbers, but also credibility. I've no doubt potential guests as well as new followers check us out at times. And if we have a good number of people that anchor what we do, then that gives us credibility and affirms that what we're doing is needed

Chris: 35:36

And if you share or like our posts, well, then you're just the best person ever. Thank you so much

Claire : 35:41

When you're a small setup like we are, and you can't do all the 1000s of hours needed to get a big social media following. You really do appreciate the individuals that support you.

Chris: 35:49

We're finishing this episode with a quote from short story writer and novelist Cynthia Ozick.

Claire : 35:56

"We often take for granted the very things that most deserve our gratitude."