Some of the teachers like cos obviously the principal and stuff would be-, we would tell before when I came to a school or something but generally, they don’t think about and they don’t really, like they would say, Oh, when you go swimming, just wear a swimming cap. And it’s like but nobody else wears one. I’d rather just not, you know. So it was just kind of like, I guess, because they were adults and now looking back, now I know it wasn’t like-, now I have this outlook, that it’s not a big deal but, when you’re a kid, it is. It’s like, it is a big deal. And it is kids, like they don’t, they can be so harsh and kind of thing. So yeah [laughs].

Yeah. With swimming at school, was it to do with like other people or was it also to do with like getting your hair wet and sort of things like that?

Yes.

And having to tie it back?

It was definitely like the whole day kind of thing. So like, if I had swimming in the morning, then my hair was wet and then dried wrong or something like it was a whole day thing, like if I have to do swimming. Then yeah, obviously, in the pool and then out the pool drying my hair like everyone would just be like [gestures hair drying] and like they would dry it how they want or they would tie it up in towels and stuff but I just couldn’t, like it was just like [facial expression]. So I’d generally try not to go under or something if I could avoid it and or I would just always forget’ my togs [laughs].

So things like that, so, it was kind of annoying like in college I’d take, I, I like sports so I took like sports science classes and things like that but, when it came to summertime and it was like swimming sports, it was kind of like, Oh, just wish I could skip this part. And when I got, as I got older, less of the, less, like I’d tell, told the teachers less so it kind of was like they thought I was just didn’t care about their class or something but it really was just like I just don’t wanna tell you, like I just don’t wanna do it [laughs].

I started gymnastics recently. I haven’t been for a while, but I had to decide that I was-, I had no choice but to go bald the first time I went because I thought that was the best way to get round it, because I couldn’t wear anything on my head, because as soon as I’d do any kind of flip or anything, my hair would come off, or my hat would come off and-, or I’d get too hot. So I had to push myself out there and just be like okay, I’m bald’ and go. And then that made it easier, cos then I didn’t have to worry about the next time I went. Even if I wore a headscarf, cos they knew I didn’t have hair under there. So yeah, things like that. But then, it took a lot of building up to get to, get myself to actually go without a wig, so. Yeah.

What was it like? What was the actual experience like of going?

It was fine. They didn’t say anything. No-one said anything. No-one seemed to care, y’know. I mentioned a little bit about not having hair. [Whispers/talking to dog – She’s kicking the sofa]. I mentioned a bit about not having hair just like in a joke or something and that was it. It was just a casual thing. So again, it was that thing where it builds up bigger in your mind than it actually is.

I think some people are quite interested. I when I meet new people obviously people are too polite to just bring it up straight away but I usually get- well, drunk people ask or some people who, you know, ask after I’ve known them like maybe a little bit longer than just like a first meeting. But they usually ask, usually ask-. Some people don’t know what alopecia is. They ask why-, some people ask have I shaved it? A lot of people say that on nights out maybe it’s like, Have you-? like, No, Do you bother to shave your head or just-? I’d say, No, you know, it’s-. Sometimes it depends how talkative they are cos I can explain what it is or if they’re so like out of it, I can go, No, it’s just natural, or something. But usually, yeah, the most- most question is, Will it ever grow back? Can I touch your head? is also a big one. I don’t mind that at all. I can see why some people would mind that but I don’t mind. So it’s fine. What else? That’s the main two to be honest. I mean people- people- most people here at this university know what alopecia is which is quite good. Back home not many people really knew like they were familiar but like I talk to my flatmates some-, they all kind of know people, of people who have it. So it’s much nicer for me not having to really explain it to everyone.

Yeah, I’ve had a lot of like misunderstandings of people thinking I have cancer and stuff and. When I was on holiday I had a couple of people come up to me and y’know thinking I had cancer and they’d had cancer and they were really, really nice and positive, because I’d bought, I’d just walked around for the first time in four years since losing my hair, it was the first week I’d gone without covering my head once. I’d never gone week without not covering my head. And I just didn’t really mind and I just did my own thing and two people came up to me and it really stood out to me that it was two difference experiences. One person, I then said, y’know, oh no, actually I have alopecia’ and he was like oh yeah, I used to have alopecia blah, blah, blah. And we really got on and spoke about it and it was easier to talk to him, cos he understood. The other person, when he questioned me and said that he’d gone through cancer, it made me feel quite bad and awkward, because [laughs] he made me feel quite bad and awkward, because when I said it was alopecia, he kind of had a blank look on his face like he didn’t know what it was, so he didn’t know how to answer. And the conversation just kind of stopped and it was really awkward, because even when I explained what alopecia was, it was almost like he felt tricked by me, because he thought it was cancer. And obviously then I felt really bad, because I didn’t wanna like miscon-, like anyone to kind of get the wrong message or anything, so, yeah. But I’ve never had like too much of a negative reaction in person. I have online, but I think people find it easier to kind of be a bit more harsh online than they do in person.

And what about that scenario you mentioned with when you were with your boyfriend and someone asked his permission to?

Yeah I mean, I don’t really understand like what the thought process was behind that because I, that, that annoyed me. That really annoyed me. I mean I don’t get annoyed easily by stuff like that because I always understand that a lot of people don’t know about alopecia, they don’t know what it is. But that did annoy me. I mean I don’t really know how I was meant to react to that like, be like, Yeah, tell him that’s it’s okay. And then he tells him that it’s okay like it’s the fact that I think the thing that annoyed me the most was that he literally took my agency away from me, because I, if my boyfriend wasn’t so aware of the fact that would annoy me, they might be like, Yeah that’s fine. Touch my girlfriend’s hair. And like I just, I don’t understand what the thought processes behind that kind of thing because just, I mean it’s difficult enough when you have something that people find kind of odd and freakish, and then for somebody to not ask you personally about something to do with your body it’s just, it’s uncomfortable. It’s really horrible. It kind of makes me realise what a lot of people who are like physically disabled and visibly disabled may often say that, like their carers or their parents get asked things instead of the person. And I mean it’s just, yeah it, I mean having alopecia makes you very aware of things because you’re very aware of people’s prejudices and people’s interactions with people that they don’t consider normal. And that example just really stuck out for me because it was just bizarre like, I just, I didn’t understand it at all. But I did have a go at him.

Yeah.

I did have a few words, yeah.

Say if it’s like eight o’clock at night, should we go out for a drink? And there’s the whole getting, we’re getting ready thing. And when I want to go out like say we’ll go out drinking or to a pub or on a date or something, I have my extensions in because I feel more comfortable and I don’t have to worry about like moving too fast or someone like seeing it on a night out when they’re drunk and saying something. So it does take a lot, it does take a fair bit for me to go outside, like some days I just don’t feel OK like with being outside like in whether it’s the weather or what I’m doing or like if something has gone right. If my hair hasn’t gone right then I just, I can’t, I just can’t do it.

But that’s just something that I, it’s a personal battle that I have to get over. But with, to do with friends though I’ll always go and see my friends like in a closed environment, but when it’s when we’re outside in public that’s when I do start to get quite worried, like it does take me a lot, a lot of time to get ready.

Yeah.

To be OK with leaving.

Like as an example, I know, so I said a little bit about my social anxiety that sort of developed. There have been times that like I’ve been arranging my hair, so when I was sort of arranging my hair properly in front of the mirror sort of thing. There were times when I was arranging my hair for like literally an hour and a half, two hours, just doing it again and again and again and again. Sort of getting late to see friends and then I’d be like I don’t want to go see friends. So there was a time, specific time when I was with my boyfriend and we were about to go see friends. And we were already an hour late cos I was arranging my hair and he kept texting them being like, Oh well, we’re going to come soon type of thing and then I was just like, I threw a strop being like, I don’t want to go, just go without me, whatever. And then I got quite angry at him and I know, I apologised to him afterwards but I got quite-, I think I was just taking out my frustration of my hair out on him which I think is very easy to do [laughs] when you’ve, just getting really annoyed and you can’t really blame your hair cos you can’t [laugh]. So yeah. So I did get angry at my boyfriend and, bless him he took it really well and he was, [laugh] he was okay with it all and sort of very supportive and [laugh] yeah [laugh]. But obviously I wish like I didn’t do that kind of stuff but it is good to have my boyfriend around to help me with it.

I was on it was my photos on Facebook and I hadn’t like-, I didn’t have all my photos private. And this guy out of nowhere, just started commenting, why have you done this to your hair? You looked really beautiful with your lovely long hair’ and commented on about five or six of my photos. And then he was like, you’re such an idiot and blah, blah, blah, and shaving it. And he just jumped to the gun thinking that I’d shaved my head and someone else had commented, a different person saying, oh, the things you do nowadays for fashion. And again it was that, it was that like, it wasn’t just judging someone, it was criticising them before you even kind of make the right judgement. You just criticise straight away and obviously then, I was just like, you need to educate yourself’, y’know, blah, blah, blah. But y’know some people reacted well and some didn’t. One of the people just didn’t get the message. And so I had a couple of people having to talk to them because they just wouldn’t leave me alone. They just wouldn’t stop commenting and obviously I said it didn’t bother me, but it actually really affected my confidence. And the next week or so, I wouldn’t-, I didn’t upload any more photos. All my photos were private. I didn’t go out without a wig. And I was just y’know more conscious of what other people could actually be thinking, cos that was a real person doing that, it was a real person writing that. So that kind of brought it more, y’know, like real to me. It made it more real.

I think considering like we’re supposed to be the generation that like uses computers the most and are on Facebook and everything, there’s so few people who are my kind of age on there talking about like their experiences with it which is, it’s kind of difficult because you have these two like sets of people that you can’t identify with even though they have the same thing as you they experience it in different ways. So it’s, is difficult to kind of have people to I suppose look up to, within the community because there’s nobody of like your age that can kind of express their, how they feel about things. And I don’t know if it’s because they’re less willing to talk about how they feel about things because especially like even the children aren’t representing themselves, they’re being represented by their parents basically, so I don’t know if it’s that but yeah it would be nice if there were more opportunities for people of my kind of age to get involved with things.

It is [sigh], it is very emotional. You-, I tend to go in different waves with it. So at the moment I’m fine with it, and just live with it. I always say, “If anything pops up and they say oh you’re not doing it because of your hair.” That annoys me. So I’m like, “Fine, I’ll have to do it.” So like say, “Oh yeah, you’re not gonna bungee-jump.” Then if I attribute it, I’m not doing it because of my hair. Does that make sense?

Mmhm, mmhm.

Because I had it with like scuba diving. I went out to Australia, and I was just like I really don’t want to get on a boat full of people, with no hair on. And obviously my hair’s up in a locker somewhere, who anyone can get to it. Yeah. So it’s all them panics, that kind of you get quite anxious about it. You do feel kind of- cos everyone just looks at you and thinks oh gosh, what’s wrong with her?’ [Laugh] straight away. So yeah, it’s not- it’s not very nice at all. But the actual- yeah. It just- yeah, so that- but then from that bad experience, usually I come out of it feeling really good. Cos it’s like actually I did that and it didn’t bother me. So you kind of have to tackle them bad bits.

Has it impacted on any sort of hobbies that you do like any other activities you’d like, you like doing?

Well, I would of, I used to do ballet and so I would of loved to have carried on dancing and things like that but, when it comes to exams and shows and stuff, you’ve got to tie your hair back or you’ve got to get dressed up and I don’t wanna be the one who everyone has to change their hairstyle, you know, everyone wants the matching hairstyle. I don’t wanna have to like be the one that’s like not matching or make everyone be different.

So I mean the first time I kind of took a chance was at that at that stage challenge and then luckily, that got sorted but the next year, I was just like a backstage prop. I was just like I can’t do that again. Especially, because like what if I can’t do the style that they want? What if they want a bun or what if they want, you know, so it was like one of those things, it was just like I can’t do it. I just won’t do it. So yeah, I would’ve loved to have like done dancing or I used to do netball and then tying my hair up got too much of a thing cos there’s actually rules and you have to tie your hair up and I was just like, yeah, I guess it, like it limited me in that in that way, yeah.

I mean it’s not like a big deal now. It’s not like I was gonna be a professional netball player or anything but it’s just like when you like something, you wanna do it and I couldn’t. And also those kind of thing, you make friends through so it was kind of like, it was unfair that all these people would go to games and stuff after school and I was just like going home and. Feeling sorry for myself, as you do when you’re young, so it was kind of like, yeah. But I’ve never really let it affect my personality I don’t think, like I’ve always been happy so it’s just in the back of my mind, I’ve always been like damn it I wish I could do that. But you get over it, yeah.

And then I had to quit dance. I used to really, really, really love dance. I used to do it for five hours on a Saturday morning, which was three classes. And I had to quit just because I didn’t feel confident any more and obviously when you’re dancing you have to be confident in yourself and like portray yourself as being confident. But because I was like really sort of in myself, I couldn’t do that any more. I just, I stopped enjoying it so I quit that. Which, obviously now, I am really annoyed about, but then I couldn’t think of any other option. But I started dance up again now but I still do it with private lessons, so one-to-one, because I still can’t perform in front of people. And then I quit guitar just because I felt like I could never perform, so I would never play in front of people just because I didn’t think I was good enough. And obviously if you’re playing an instrument, people are watching you play the instrument. So, yeah. It’s been a bit of a shame, because I enjoyed both of them a lot. But yeah, I didn’t really feel that there was another option.

But there were loads of options and opportunities that I had at school to do anything that I wanted, as in, to project my feeling-, especially in drama I’d say in drama, anytime I felt insecure or angry or something, I’d funnel that through into another character especially when it came to school productions. So this year we did Little Shop of Horrors last year we did a film, a production called Chicago and I was lucky enough to get a main role in that. and it’s quite easy as well for drama because I don’t have to wear wigs but if I want to be a particular character I can wear a wig where a lot of people don’t have that luxury. Where they can’t go, right, I’m this character so I need to cut my hair, I need to dye it blah blah blah, I need to do whatever’, whereas I can just go right, I’m going to wear that wig [mimes quickly putting on a wig], done.