On this episode, hosts Jennie and Zoe chat to campaigner and alopecia advocate Laura Mathias. They talk about learning to love yourself, dating and life without wigs.
JENNIE: Hello and welcome to series three of the Undressing Disability Podcast, where we talk all things sex and disability with with me, one of your hosts, Jennie Williams, and my lovely co host, Zoe Lloyd. We have so many exciting guests on this series and we really hope you enjoy it just as much as we do.
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On this episode, Zoe and I chat to Laura Mathias about living with Alopecia, learning to love yourself, dating and life without wigs.
Hello, and welcome to the Undressing Disability Podcast. We are back. This is quite an early recording for us. It's before 09:00 and Zoe's made it.
ZOE: Listen to my voice. This is how early it is, everyone. So you can call me Dave today.
Oh, my God. Dave.
JENNIE: Hello, Dave.
And we have the most wonderful guest, Laura Mathias. And I actually said it right. I said it right. Yes. Thank you very much. So before I introduce Laura, I just want to say we did this disability expo and a few weeks ago and we were there and there were lots of people there, and then suddenly this burst of energy came bundling up and I was like, I really like this person. We want to chat and we have and you're here.
So. Hello, Laura. Thanks for joining us so early, before 09:00am
LAURA: Hello and thank you. I mean, I'm sorry, Zoe. It's my fault. I was trying to squeeze this in.
How boring, have a full time job and then want to just chat about everything around work all the time.
ZOE: I thought I was going to like you, but sorry.
LAURA: I'll make it back up to you, I promise.
JENNIE: Well, yeah, it must be quite special because Zoe never, ever gets up early for anyone unless it's training.
So there we mean, before we start, kind know, I think the best way, really, to introduce yourself is you introducing yourself rather than me telling your story. So are you just kind of happy to dive in and tell everybody kind of who you are and a little bit of your background story?
LAURA: Yeah. So I am Laura, as you said. I'm now 32 years young and I was 13 when I started losing my hair to Alopecia. And I did not deal with it. I didn't deal with it at all. It hugely impacted my mental health. This changed to my physical appearance, an autoimmune condition that I had no control over.
But doctors told me, if you just try and chill out a bit, calm down, I'm sure your hair will grow back, which wasn't helpful, and it didn't. I was going through a particularly stressful time at home. My hair fell out in the space of a few months and I stopped leaving the house. So it was quite a severe time of my life. And it wouldn't be extreme to say I literally cannot remember what I did for about six months because I didn't go to school, I didn't leave the house.
My whole world crumbled just because of well, I say just this is what people often say to me. Oh, it's just hair loss. Well, when you're 13 years old and you suddenly don't look like anyone else you've ever seen in your life, yeah, it was pretty bloody tough. But I did eventually shave my head.
I got a wig because I felt that was my only option to assimilate and look like everyone else, not deal with the mental health implications of my visible difference. I got back to school and I've been faking it till I make it for the last 20 years. And when the pandemic hit, I know all our routines were disrupted, everything was put in a bit more to know or perspective, even.
And for a lot of us with underlying conditions of any kind, I think it was a really scary time. But also we were just spending much more time at home. And home for me was a place where I could be Bald Laura, and I didn't have to paint my face with makeup and put my wig on every day and present to the world.
So for me, it was kind of realising that it was weird, that weird is an understatement. There was clearly something going on, that there was a different version of me when I had to leave my front door versus who I was at home. And so the pandemic started bringing those two things together for me.
And, yeah, I started to ditch the wig and I've been building my confidence ever since. And actually, I don't think it's extreme to say that kind of coming to terms with my visible difference has probably then helped me interrogate all the mental health implications that I've dealt with and kind of pushed down for 20 years.
And also the fact that it's finally allowed me to get an ADHD diagnosis and I've just started learning about myself, my body and my mind a hell of a lot more in the last three years.
JENNIE: It's really interesting, isn't it? Because I've got girls and I've got a four and a five year old and they are already very conscious of their looks.
I want my hair in Elsa plat. I want princess hair. It is all that they have got a little lisp, that was a a real impression.
And obviously that's that thing that's kind of pushed on us, isn't it?
And going through school, let's face it, girls can be bitches, kids can be.
LAURA: It was the boys, really. The boys had gone from being my best mates in year seven when I was 11/12, because appearance didn't wait. It must have mattered, but it didn't matter in the same way hormones hadn't maybe fully kicked in at that stage.
And then, yeah, they suddenly just turned on me and all of a sudden I wasn't their friend anymore. I was fat, ugly Laura, or Laura the one with the wig, or Laura the one that was losing her hair. And it was crazy how quick kids were to define me by the differences of my appearance.
ZOE: Yeah, suddenly your personality didn't matter. So did you find that you overcompensated with that? Did you try and be extra funny, extra loud? I know you obviously said that you just completely became a recluse for a period, but did you find that you did sort of have to create this persona that is confident?
LAURA: This is something I'm still working out, Zoe, because with the intro, how lovely that I'm a bundle of energy that came up and, yeah, maybe I am loud, energetic, maybe too much, according to some people. I don't know if that's to do with how my brain is hardwired with ADHD.
And I don't know how much of that is a response to the trauma of at this point in my teenage years, when my personality was kind of forming and how I was kind of interacting with the world. I did feel the need to create or exaggerate a persona. But I think, really, if I look back before the hair loss, I was always a very confident, chatty, curious person.
I was always an extrovert and I probably always had ADHD.
So I think throwing this visible difference into the mix, it was almost like, yeah, it kind of disrupted the confidence because suddenly I had a reason that I shouldn't be confident, that I wanted to be quiet, I didn't want people to look at me. And that went against who I really was. So it was a real battle, actually, in terms of, like, yeah, this new self consciousness that was just overwhelming.
So I remember being crippled by my anxiety. And I know that's an extreme word and probably seems a really insensitive way to use it, but I'm really keen to think about how having a visible difference isn't just having a visible difference. The implications on my mental health was it was it stopped me in my tracks.
And I remember, even when my dad dropped me off at the school gates, I decided to walk home 10 miles back to the village I lived in, rather than walk through those gates. And that was supposedly once I'd got my wig and I was ready and trying to pretend to be okay again, but I wasn't okay and I wasn't dealing with it.
So when I think about who I am now, I genuinely think in the last three years, since kind of coming out, as it were, about my alopecia and learning about my ADHD, I think I'm finally leaning into the person I actually was meant to be, the authentic side of my very confident, energetic personality.
And, yeah, there are times where it probably is still faking it till I make it. And don't get me wrong, I still get nervous, I still overthink things, but I do love chatting to people and that is something that I've realised. It is a strength and you can lean into that. And if I'm too much for some people, well, tough shit. They're not the kind of people that I want to be chatting to, is what I'm trying to tell myself.
ZOE: Yeah, absolutely. And I think, like you say, it's that acceptance of your whole self, which I think is a maturity thing anyway. When you're 13, you don't even know who you are really, are you and you're going to be influenced by everybody around you. So I think that is a maturing thing.
I feel like I'm going through the same process as well and it might have taken me like 25 years of becoming disabled and not accepting it, but then learning who you are within that. And I think that's really an important point when it comes to pride and disability. So you and I have become disabled, as has Jennie.
Other colleagues of ours were maybe born disabled and I think there is real difference in that, isn't there? Of adjusting who you are, how you see yourself, how your friends and society sees you.
And I very much had a separation of the Zoe that I used to be and then the Zoe that was ill in inverted commas. And I used to be like, oh, the old me used to play tennis and the old me was like this, and then I'm like, oh, but now I'm like this.
And it took me a lot of therapy to bring those two people together and go, this is me. And I don't tend to find that I talk like that anymore. I don't tend to say, that old Zoe, and so I have managed to sort of bring those together. But I do think that is a long journey for disabled.
LAUR: I don't think there's a timeline that you could have ever promised yourself to come to terms, because one of my best mates is a very fierce Scottish lady who I met, actually through the Alopecia community, but since I've known her, she is now a wheelchair user and she's got a spinal injury that was accrued.
And I've seen her have to come to terms with this and I've seen her really struggle with seeing this as a new identity and she's just Michelle. She's always been Michelle, but the impact is huge. And so I do find it difficult sometimes when I'm talking about being a bald woman and being a neurodivergent woman, because I do feel like there's this hierarchy of diversity or disability and I'm like, oh, should I really be in this space?
What am I talking about? But actually, I think everyone has a story and everyone has things that are unique to them, but there is so many shared kind of feelings around it. What you just described, touched, like that is so how I felt. I always used to say, well, if I had hair, I would do this, or kind of imagine my life in two parts, like a fork in the road, when I physically changed and became different.
And in my case, it was a visible difference that makes me look, to many people, unwell.
Yeah, it changed how society treated me, it changed my confidence, it changed what I thought I could do in terms of my, well, I can't go into, I don't know, media or something, which is based on how I look, all these things. And it's so interesting, that fork in the road where you kind of feel like you have to mourn the old version of yourself and it's like, well, yeah, no, there's no it's all me, it's all us.
ZOE: Yeah, it's all the X Factor journey, as we like to know it is the journey. I think it's important to look at that. Sorry, Jennie, I know you want to come in, but I was just going to say, when you talk about the hierarchy, I definitely agree with that.
I think, like, more visible physical deformities or disabilities, you go, or they're having a harder time than me, but ultimately we're human and we've had a massive life change and it's those bits that impact on us. Not necessarily the actual disability, it is the change of status, it is your fear of people judging you.
It's all of that, and any disability can give you those feelings. So I don't think that we should be that in that hierarchical terms, but totally understand.
JENNIE: Yeah, I think as well, it's this kind of level of responsibility. Like, we were talking to the lovely Sam Renke the other week and I think that we, and I know I've certainly done this, almost feel like a bit of a fraud sometimes.
Like you say, it's like hierarchy of, oh, am I really that disabled? And I'm not really thinking about myself. And then I have two personalities and I know why I do this. I do this presenter personality. I'm training. This is me. I'm on a stage, I'm doing this talk.
Yeah, I'm proud. And actually, I did a talk this weekend at a festival and I really had to pull it back and go, do you know what? It's okay to have a really shit day. You don't always have to be the spokesperson. You don't always have to feel super confident, because that particular weekend, I wasn't feeling that confident, I wasn't feeling that great.
Had a cry in the tent and I think we put on a suit of armour a little bit and go, this is me. And it becomes quite a script and a story. And you kind of go, Ask me anything. I don't mind, ask me anything, I'm really open. And people think that they know us really well because we let them into a certain point and then we go, all this other bit we're hiding behind.
And I think we all do that. You have to do that, don't you? To a certain extent. But again, I then have to really pull myself back and go, how authentic am I being right now? Because right now I'm not having a great time, but I'm telling everyone, be proud.
And actually to me, disability pride, I've had to really rethink it and kind of go, it's about me just being proud of myself, that some days I have good days and other days I have bad days and that's all right, rather than kind of going, I'm here, look at me, and just being so shouty about it.
LAURA: I think that's really relevant when it comes to being open or comfortable to talk about relationships in particular as well especially and how that intersects with whatever your difference or disability is. I am pretty open on social media and yet I don't talk about my well now, as of two nights ago, ex relationship.
And I've built my whole kind of online persona being really open about coming to terms and the challenges I'm setting myself around my alopecia.
But that's a part of me that actually I know there's a lot to talk about and I know it's a part of the visible difference community that relationships and how you feel about yourself and how you approach either revealing your visible difference or talking about it or having sex.When you feel there are parts of you that will they be palatable, will they be desirable? It's a huge part of relationships and I think people want to talk about it and hear about it, but it feels like a lot to share that when you're going through it.
ZOE: Yeah, I think it's either hugely shaming or just very emotional experience, isn't it, for yourself?
And I think when we present the stories, as Jennie said, that's the bit that we're comfortable with. So you're like, oh, I've packaged it nicely and you're not touching my emotion. I can still tell you the know, hardship, the story, but I'm not attaching my emotion to it. So I'll keep you nicely safe.
And then I definitely found the relationship stuff, the sex stuff was a little bit too shamey for me and so I couldn't be as vulnerable because I was like, I'm so hurting that I daren't share it in case you punch me. Whereas then once you've accomplished something or something you're comfortable with, then you can present it again.
So I've definitely found that, okay, you don't have to be cool with everything. You wait until you're cool with it and then you can share. So that's how I deal with it anyway because if I haven't got shame around something, then I feel like, well. No one else can shame me, so I wait until I get to that sort of point. But definitely, yes, relationships is another level, isn't it?
So you can be on Instagram getting, yeah, I'm really proud of my hair loss and then suddenly you've got to be this vulnerable woman who is, am I attractive? This is really scary
LAURA yes on a dating app or something and being like, Good Lord, this is horrific. Where are all the lovely supportive comments here? This is outrageous.
JENNIE: Well, that's it. And I think this is the lovely kind of loop if you, like, glitch in the system that we find our people, don't we? This instagram bubble, or whatever it is, whatever platform you're on, that people are going, yeah, you're beautiful, you're amazing, you're you. And you go, yeah, we're going to do this. And then you go out into the real world and then you go what???
LAURA: Why are people applauding me as I walk?
JENNIE: How do you find that? Because there's got to be that really kind of conflicting world that you particularly because in a very different situation than both of you, Zoe, you can't hide your wheelchair. You're in a wheelchair. Even as much people going, I don't even see the wheelchair. It's a massive great wheelchair here how you missing it? Obviously you can see that you've got hair loss. I don't.
So I've got a very different experience to you two in that sense. So how do you deal with that difference?
LAURA: It's really hard to reconcile who I am online versus how I'm still working on my confidence out in the real world, like air quotes. And that is something that actually, during this whole process, since the pandemic in setting myself like, oh, I'm going to go to a theme park today, therefore I can't wear a wig.
I haven't been to a theme park in 20 years because I wore a wig. And actually, the support I got online versus how I felt doing that, yeah, there's a huge discrepancy there. And I still find in my little town, my safe space feels like wearing a bandana, where it's very obvious I don't have hair, but I still feel like that one level of protection.
And yet when I go to London for the day, I feel a lot more able to present the version of me that I want to how I want to feel, which is, yeah, people might look at me because there's no other bald woman on the street today, but whatever, let them look.
This is a learning opportunity for them, which is what I try and tell myself, but not every day do I want to be a learning opportunity. Not every day do I want to think, I don't want to feel like I'm drawing attention to myself, but I'm not, I'm just existing. And that's really difficult because people feel when there is something visibly different with you, that it gives them a right to inquire about you. It's kind of how, again, we're thinking about the intersectionality.
When I think about my sexuality, and I don't often talk about the fact that I'm pretty positive I'm bisexual, it's not something I've ever labelled myself with. And yet, as soon as you talk about, like, I was talking to my friend and he was like as soon as he talks about being queer, people feel that they somehow can ask him very pertinent questions about his sex life and he's like, it's just this bizarre thing, you wouldn't do it in any other situation.
But there are some spaces where it's almost like if you give an inch then people think they be like oh fascinating, tell me more. And yeah, I get people all the time that either give me sympathy because they're making assumptions about my health or once I say it's alopecia they completely belittle it and yeah, and it's tough.
But then there are other days where I do like maybe and it is sometimes in our capital city of London where it is a lot more diverse than my tiny little town and I get less looks and I have noticed that and it's interesting. It's about kind of finding those spaces in the real world that almost start to echo the bubble I've created on Instagram and Disability Expo was a perfect example of that real life bubble that felt like such a safe space to just exist in.
And the label of disability is one that I've kind of battled with. I didn't know if I should claim or use that title and that's one I'm still coming to terms with. But I almost don't think it matters what you call yourself. It is just about finding people that don't want to label you.
They don't want to define you by one box because none of us fit neatly into one box. And I know that's a cliche and I'm hoping people on the podcast will have said that before and I'm sure they will. We're not know, Zoe, you are not just somebody who is disabled. Neither am I. Neither are you. I kind of went off on one there, sorry. Had a rant there.
JENNIE: This is the place to rant and I think it's not something that again this battle of oh, am I allowed to use this label? And by proxy your alopecia has certainly, especially when you were younger, massively disabled you because it ended up affecting your mental health so much and did it have a long negative impact on your day to day ability to do life? Yes, certainly when you were younger it absolutely did. And changing your routes to go out of school and everything that comes with it and I mean I'm lucky that I live somewhere like Brighton which no one would even look twice at you because, I live in an instagram bubble basically being in Brighton and I appreciate that as well, when I go out, my friends say you always look like you're dressed to go to a festival and I was like yeah, because that's how we are in Brighton.
But I think again it's this kind of having something like the Disability Expo, we talk about disability pride. I could see the pride in people going, yes, I'm with my people here. And I've always said this about disability, we are 20/30 years behind as a movement because you have Black Lives Matter, you have LGBTQ community. When people talk about disability community, I always say, what community are you talking about?
We're fragmented into millions of pieces because we've all got such different conditions. But things like that, events like that do bring people together and that's when you get this sense of pride. And I also think what you said about this level of responsibility, you don't want to go around teaching people all the time again, Sam Renke said exactly same thing the other week on her podcast. There's times you just don't want to be the know, you just want to go out and buy some bread rolls, and you don't want to have to have this conversation and educate someone. So, going back to dating, how are you feeling about all that now then? Dare I ask?
LAURA: I have been in two very serious relationships for the last decade and I am very newly single and I am so ready to be single.
The idea of dating does fill me with dread. Not in the way that it used to, because the way I approached potential romantic partners before was I was burdened by the secret of the fact I was a wig wearer. I felt absolute shame in being a baldwoman. I honestly believed that made me a two out of ten. Like I was rating myself and putting shame and stigma and judgement on myself and it's so ingrained and so deep and I realised I need to fix all of that before, and I have been very lucky. The people that I have been in very serious relationships with. I've seen my growths in both of them. And of course, I'm not defined by my hair loss. But at points in both of those relationships, it has been a huge thing for me, a huge issue, especially at the beginning in terms of intimacy.
It's quite radical to think how I presented in the bedroom with those people at the start of our relationships versus how I actually felt most comfortable at the end. Aka, I went from sticking a wig on with so much tape, terrified of it falling off and not really enjoying myself, to at the end of a relationship, just being bald and who I am and enjoying sex a hell of a lot more, being that version of myself.
So I can see that journey very much so. But it takes a while to get there. And I know that with any new person and being intimate or in a relationship, it's very likely some of those old feelings are going to come up because it's different with different people.
But ultimately, the biggest thing is I've realised if I approach any new relationship, friendship, romantic or otherwise, with confidence about who I am and what my Alopecia is and my ADHD or what my difference is, and it's just me, it makes it go so much more smoothly. The issues that were created before weren't around my disabilities or differences.
It was because I was bringing all this shame and burden into it. So they felt they had to respond in kind and have a reaction, and they probably wouldn't have if I'd just been like, yeah, this is my situation. Sometimes I might wear wigs, sometimes I won't.
Who knows?
ZOE: Kind of links back to what I was saying about the shame bit, isn't it? Until you're okay with it, other people aren't going to be okay with it. Really. So that's why it is so important. That's why it is so important to do that work on ourselves, because otherwise you're going to be this fragile object that gets hurt by every comment, every relationship, everything.
We've got to prepare ourselves and then go into it as you. As me, as the real person. Yeah. And I'm going to be particularly struggling there because I have ADHD, and a big part of that for lots of people is this rejection sensitivity. And it's not just an excuse, I respond big time to any sense of projection and I see it. I see it in all my interactions and that's something. It's all very well me being aware of how my neurodivergent brain works, but doesn't stop the emotional responses to stuff. And relationships are a lot of emotion. A lot of emotion.
ZOE: Hence, why I avoid them. I think it's so interesting listening to you about the ADHD and that rejection thing, just within our own training that we're giving about neurodiversity and stuff. I'm like looking at it, at the material and I'm going, oh, I think that might be me. And I've just diagnosed myself with a million different things now.
But that is so me. The rejection thing is huge. I am so, so sensitive. And before I didn't have a label on that, I was just like, oh, yeah, I'm a bit sensitive, but I definitely avoid those kind of relationships because I think the emotion is too much. And so I'm like, I'd rather just not deal.
That's fine, I'll go along, just being single and pretending I'm okay with that. And I am, but it's now making, me realise, what am I avoiding?
LAURA: Yeah, well, you're avoiding, probably not to psychoanalyse, but I can do it to myself. The question was always, if I got rejected, would deep down somewhere, even if I never verbalised it or even had it voiced in my head, was it because of how I looked?
Was it because of my difference? That would always be the question. Somewhere lurking.
No, it's because you were so preoccupied with those differences and under-confident and felt like you weren't worthy. You came across like a really intense person, or a 22 year old, or when someone tried to kiss you and out their hand on your neck, you were scared they'd feel your wick, so you literally ran away.
That's probably why you didn't have a relationship.
JENNIE: It's a mixture, isn't it? It's the layers of it's not just one thing. And this is the thing. I think we feel like we've only got to have one disability. And I say this my headlining disability right now, is this. Because this is what's really disabling me in this very moment.
And then there are other underlying things that are disabling me as we go on and we talk about disclosure. And I always kind of, right, I'm just going to get out my list. This massive scroll rolls down of reading these things out.
ZOE: I think Jennie likes to require disabilities, don't you're?
Like, oh, I've not heard of that one. I'll have that.
JENNIE: I'll have that. It's like some magical thing. And my body goes, okay, autoimmune condition. You haven't had that. There we go. And I'm like, you don't tend to just have one.
LAURA: You tend to collect them as you go.
JENNIE: I just have to say, actually, as a confidence thing, it's really interesting. Again, when I was at this festival, I was chatting to this guy and we were talking, and within about five minutes he went, oh, I just need to say, if you fancy men with hair, then he took his hat off and he said, Well, I haven't got any. I'm losing my hair. And so I just need to put it out there. And it was really interesting what you said, Laura, because he then made it into this massive thing and I actually was able to say to him, okay, I can see that you're really sensitive about this. How do you want me to react? Because it doesn't bother me. And it genuinely didn't. But it was bothering him so much and he must have brought it up about 10/15 times later on in that night.
And it really clicks, actually, something you said, it became very intense. And I went from fancying him, absolutely, genuinely fancy him, thinking I was doubled over with laughter, to him kept bringing it up.
And I was like, this is a thing for you that you haven't worked on. This is the thing that you know, and I think that's the thing with all of us. We've all got it. I do the same thing. It's about again, it comes back to that cliche. You got to kind of be happy with yourself and work on yourself before you can start entering relationships.
LAURA: Yeah, I 100% agree with that. And I can empathise so much with that guy and that scenario. And it's like, put it in terms I always just say, I've got the extreme version, potentially, of what other people think of when they think of self conscious days when you live with a visible difference, it's like a very extreme version of when you have a spot on your face and you feel the need to point it out to all your colleagues before anyone has a chance to say anything. And it's ridiculous, but that is, times that by a million and know that spot's going to be there for life and actually it might be a birthmark on your face, or it might be that you don't have any hair on your entire body.
And actually that sounds great. And creepy guys on dating apps always want to know, so does that mean you don't have any hair on your body? And I'm like, really? Is that the question we're going to? The absolute sincerity and the innocence they bring to that question, thinking it's an okay question to ask me and it's like you're asking if I have pubic hair and it's not acceptable.
ZOE: And also they might date someone that shaves off all their pubic hair and they won't find that out until they're going there or if they have a conversation about it. So what difference does that make anyway? It's like, it's such an intrusive question.
LAURA: Well, I'm sure Sam Renke asked probably, I've had conversations with Sam Renke, who is know, talking and in her memoir talks about almost like some of these people having bucket lists of people they want to collect and conditions they want to collect.
I can't actually imagine a human in this world that would want to do that. But I genuinely think whereas I've always thought, oh, I'm bald, I'll be less desirable. I have heard so many scenarios through friends of friends who have talked about me or now having had some interactions on dating apps where it's like, oh, I can deal with the fact she's not got hair in her head if she wears a wig.
And then actually, oh, she'll be nice and smooth and it's just like it's just so creepy.
JENNIE: We call it famously the Tosser filter. And I just think it's so true. Your tosser filter is out there. Zoe's tosser filter is out there.
Well, you can hide it for you wigs if you want to, but I think it's a beautiful thing and a terrifying thing all at the same time. But at least it cuts through the crap, right? And you're not having to do that with mine because, again, it's so hidden, i'm at what point do I disclose? And as Zoe says, multiple things to disclose.
But for me, again, even with sex, because it's exceptionally painful, because of my lichen sclerosis and it affects my vagina, it's like, what point do I say, actually, I don't even know if I can have penetrative sex? It can be really painful for me. You don't really want to say that early doors. So it's about this trust thing, about kind of going down that line. But I think what's really important about having these conversations for people who are listening is that quite often, again, it comes back to this instagram thing. We quite often see people who are there who are doing it, who you think, oh, God, they're smashing life, they're living their best life and they're really happy and they're really confident.
And sometimes it can make people feel lesser because they're like, I don't feel like that. But actually hearing the voice behind the instagram persona and the reality, I think, is so important because it makes people feel connected. It makes people feel seen and real and knowing that you're going to have shit days and you're going to have shit weeks and months, almost, or whatever, but also great times.
And there is places that you can go and people that you can speak to and that will see you,
LAURA: And there's no right way to deal with your difference or your disability or your visible difference.
I am not the voice of Alopecians. I am just one person that has had an experience of significant hair loss. So did lose everything on my body, and so it is again, is there a hierarchy there? I don't have eyebrows, I often don't have lashes. Like, all these things that I know people struggle with. So that's why they might find my Alopecia page and they might look at the fact that, oh, she's done a photo shoot, therefore she's clearly super confident. I'm going into the office later today. That is something that I have only done in this job that I'm currently in. I've only been bald in this office and I've only been bald in this office probably four or five times still, because I work from home most of the time, and so that's still a journey. And there are still days where I fancy wearing my bandana. There have been days where I've genuinely considered wearing a wig.
And then now I've almost created a backwards issue for myself. I'm like, but people won't know who I am. Realistically, the biggest thing for me wasn't a confidence thing. The reason that I really don't wear wigs very much at the moment is because it was not physically good for me, my eczema, because autoimmune condition of eczema, my wigs would create such a sore scalp, like, to the point where my wigs would stick to my scalp. And I had open cuts for 20 years on my head and I didn't cotton on that I was basically hurting myself. I was putting myself in physical discomfort for the social comfort of other people.
And that was kind of like the realisation that made me think, this isn't about me kind of being a teaching moment for other people. That's a nice side effect, actually this needs to be selfish. What is it that is going to make me the best version of myself and actually being in constant, chronic pain because my head is bleeding is probably not the best version of myself.
JENNIE: Absolutely. Isn't it that whole medical model, social model, like what we're doing to conforming to make other people feel comfortable. I think it's equally so because I was going to ask that question about wigs, actually, how do you feel about wearing them again? And I think what's so important for you and everybody that's kind of listening is equally no one feeling like they're becoming that poster child for things.
And actually, if that day you want to wear a wig and it's comfortable, you can wear a wig. You don't almost put yourself in this bubble and then people's going, wait a minute, I thought you were saying you're really proud about not wearing wigs and being bald. I know, but some days I want to because it's dressing up and I can do what I want.
LAURA: Exactly, and it's just letting people do stuff on their own terms. Like, I don't have to justify myself to anyone and actually existing online and I've not got a huge social presence, but in the sense that I've definitely got a community. And then sometimes you just get these bizarre DMs with people who are they're affronted by a choice or you've made or something you said.
But I would never, ever say wigs are bad or wigs are good. It's like, what do wigs mean to you? Like, I'm never going to tell you what you should be feeling or what you should be doing. I can tell you the things that maybe have allowed me to get from a point where I literally would not leave my house.
Well, one, full stop to two, not leaving my house ever without a wig on, to three, being able to do that on occasion, but then some days, still knowing that it's something I really have to just take a breath at my front door and kind of present to the world.
It's a new kind of presentation, but just like any confidence and any individual, it's not linear. There's up days and there's down days, like you say. I did just want to reflect, though, I thought it was really interesting when we were talking about that bubble on Instagram versus what it's like in real life and walking down the street and actually something I really struggle with, and I'd love to hear what you think, is around, I love my visible difference community and I love my hair loss community. But I was in Brighton with a friend who also has Alopecia Universalis, and together the two of us got a lot of stares because we were two bald young women, and it kind of like I was like, oh, should I be wearing my bandana?
It felt a lot, I don't want to feel like that because I love being part of the community. But how do you... yeah, it's a weird one, isn't it?
ZOE: I always think it's quite awkward when you get a fellow wheelchair user and they crossed you in the street and you have the awkward nod like, all right, to someone else. That's blonde. No, it's really awkward, or you have the usual really quicks of like, we're going to have a race.
And I know some people get really offended by that. I don't, because I think that everyone's feeling awkward. Let's all just say, it's fine. I don't have that kind of chip on my shoulder. Whereas some people are like, I've heard that a million times. I'm not going to hear that again.
I just think, let's just laugh along with each other. We're all just muddling our way. And then I went to a gym, actually, at Stoke Mandible Stadium. So there's loads of spinal injuries, made friends with more wheelchair users. And I definitely had a hierarchy of what was cool as well. So because they were spinal injuries and they could do sport and their upper bodies maybe were still fully functional, and mine isn't because I've got arthritis, so every joint is stuck. I was like, oh, yeah, but you're cool. You can play basketball and you can get out of the car and swing your wheelchair over. And I was like, oh, I'm not as good as them. I wanted to have, like a skiing accident or something like that, rather than going, yeah, I've got arthritis, however, so I was happy to talk to them. Like, this is my own internal ableism, right? I was like, oh, these guys are cool. This is quite cool to hang out with them. That's fine. Then we all went out into town one night for a massive gym night out. And so there was like about six, seven wheelchair users.
And suddenly I was, like, so embarrassed walking into this pub because it looks like the specials day out. And we were all saying stuff like that and like, massive loads of politically incorrect terminology, but you could tell that's how we were all trying to deal with it.
And so I definitely found that being as a group of wheelchair users was really difficult. Absolutely. Because I wanted to be like, I'm not really this, this isn't my gang. And I wanted to dissociate from that, which is ridiculous.
And I think I maybe have a different attitude towards that now. Again, just with more acceptance and more maturity. But I definitely do think that people look at you differently when there's a group of you or even just two of you. Definitely.
JENNIE: Oh, there is massively. Even at the festival at the weekend, I went right to the front because the interpreter was at the front and Claire and I went to the front. We both just take my hearing AIDS out, and Claire took a cochlear implant out and we were just signing. So there was probably about 15/20 deaf people and we were right by the interpreter, obviously, that's where everybody was, and we were all signing and that's fine. But oh, God, absolutely. I felt completely bothered.
And again, this is the battle that I have. Part of me felt really proud of my deaf identity. The other part of me felt I was not deaf enough, and I've always battled with that. I've not really have the deaf pride and deaf of the little d and what that means and everything that comes with it.
And I was like, actually, I was able to very much walk away from that, put my hearings back in, start speaking, and then suddenly I was merged into everything else. So, yeah, I totally understand that. But I think, again, it's like, what do you do? Do you just not go out with your friends.
LAURA: God forbid, because anyone with difference has been made to feel that we do need to assimilate or hide these parts of ourselves. Why? When we're a group of middle class white women walking into a pub, aren't we like, oh, look at us. Oh, we look like we're in a catalogue.
We don't do that because that representation is just overwhelming all the time. It's literally because society tells us we are different, the underdog. We are not, as usual. And it's like so people can't compute, oh, my God, there's ten wheelchair users coming into this pub. There's ten people with disability that want to drink.
It's like, yes, right, yeah, you got come out on an Enhanced the UK staff night out, because I'm telling you, that's a rainbow. Rainbow disabilities. That's a very interesting night and normally ends up in far too much drink.
But look, I think that it's so interesting having these conversations, and I really appreciate you being honest and real and I think that's all we can do. And I think I understand why all of us go out there and do the talks that we do and the training that we do and the speeches and the podcast and all those things.
But actually, it is equally as important to keep grounded and be honest about where we are and be okay with that and show our vulnerabilities. Because that's okay as well. Because that's life, isn't it? Whether you've got disability or not. Good days, bad days. How you're feeling.
Well, I want to say good luck on the dating journey. I'm newly back single now, and I'm back out there and like, oh, God, it's a thing. It's the whole thing. So is Zoe. Do you know what was quite funny? Zoe and I went on a work night out and I can't remember where we were.
We were in Ireland and we're both on apps. And then we saw each other, we were sat next to each other, we saw each other on the app.
ZOE: Do you fancy me? No.
JENNIE: No, no. Zoe and I have been friends since we were little kids. Well, yeah, we are well and truly friends. It was quite funny.
But thank you so much for chatting to us and we will continue to have these conversations.
And my last thing that I want to say to you is oh, my goodness. Never, ever think that your energy is too much your energy is everything.
It's bloody brilliant. And I'm very privileged. I meet lots of people every day, all the time. I'm always meeting new people. And like I said, the minute I met you, I was like, I really like her. I just love everything that's going on there. So if that means anything, a compliment from me. It might not mean anything, but honestly.
LAURA: That mean a lot, because my internalised ableism and a lifetime of people telling me you're too much or too bald or too this or too that.
ZOE: No not at all. You can never be too much, not with Enhance anyway.
JENNIE: Definitely. Yeah, exactly. But thank you so much, Laura, for chatting to us, I really appreciate it and we will be seeing you soon.
LAURA: Awesome. Thank you so much.
ZOE: Take it easy.