And you mentioned before about sort of covering patches with different hair styles, could you tell me a bit about that?

Yeah because mine was on the side and the back I always had my hair down and then depending on where the patches were I’d just change my side parting but now I probably have about this much hair along the front here.

So that’s why I have a bandana to keep everything in place. But yeah, I’m I know, my one of my mum’s friends has a tiny like five pee patch of alopecia all she does is just keep her hair tied up all day.

It is just finding what, what hides it best for you and that’s manageable every day. Like for me all I have to do is brush my hair, straighten it and put it in a bandana and that’s so much easier than going through wearing like eight pieces of extensions which pull on your hair, then having to style it every day like that’s, that’s what I used to do. But now I’m. I’m totally comfortable just wearing something like a bandana or a head scarf.

The hairspray stuff I said I used to use with the brown-, brown in it. I used to be care-, I used to have to be careful with that because the brown used to come off on like furniture. And I felt like I was very conscious about when I went around to other people’s houses or my girlfriend’s house I used to like not lean on stuff properly. I used to either put my hand down here to stop like it actually making contact or-. I do forget that because it seems a long time ago but I used to really be concerned about that and like not lean back on things quite a lot because it was quite difficult.

How often would you use the sort of hairspray?

I think it was for a few months, maybe from, I don’t know, April maybe. Not, not this April, the April before and it used, I used to kinda put that on the back of my head every morning cos when I did my hair I used to put gel on my hair. Cos I just, just liked to sweep it on my face, I didn’t like spike it up but I kinda like sweeped it over. I did the hair just to spray at the back because that’s where the two ones were there and that was pretty obvious. And they, it was rea-, it was really good that, like if you looked you, you wouldn’t have known. And I used to do that, yeah, once a day. It was, it was horrible stuff though. It was sticky and it used to smell. It used to stain anything it touched, you’d have to be quite careful and do it in the shower like not- not stand in the shower and do it, you know [laugh].

And then I think it was a couple of weeks after that and it was just constantly coming out and I couldn’t wash my hair because I would like get the drain all laced up, and when you live in a shared house that really annoys people. And just like brushing, I couldn’t brush my hair. Like I would panic about brushing my hair because it would just come out and I, I’d been wanting to shave it for a while and then one night it was I think it was about 10 o’clock at night and I had a 9am seminar the next day, and I was like, Guys can you just like shave it please? Cos I’m just fed up. And they were like, Okay. And they all like gathered around in the kitchen and I was just like, Don’t watch me. Like it’s horrible. And unfortunately the clippers lost battery half way through, so I had to then like snip the rest off, but I think as soon as I’d got all of the hair off and it was gone I just, it was really like liberating, it was nice to not have to worry about constantly being reminded about your hair coming out. So I think that was when I realised that the worst thing for me was it coming out rather than not having hair. Yeah so I think, I mean it was, it was a positive experience for me definitely. And something I would do again if I ever had to. Because just I think the relief of it, especially when you’ve been living with your hair coming out for like the last four months it’s, it’s nice to not have to worry about it.

I first had my like my first bald spot when I was 14, about the size of an apple on the back of my head. I didn’t really think much of it. I was quite young. I just thought it was temporary. It will be fine, you know, nothing to worry about. Six months later, it grew back. And a couple of years later when I was 16 I had-, it came back again and I thought oh’, you know, no problem. And that time it just gradually got bigger. I just covered it up, you know, combed my hair across it, you know, just a bit-, no one really noticed. And then probably I started sixth form, I got like two smaller ones on the top of my head and I thought oh no. I was more worried about it but I was still saying, you know, It’s fine, type of thing. And gradually over that year they got bigger and bigger and they- then they met in the middle and that was really hard. I had, I had like a big spot at the back of my head for ages and I used to wear a hat a lot. And that was the most difficult time I think. I felt like I had to wear a hat because, you know, it was quite hard walking around and I felt like people were staring. People used to look because it used to look a bit odd. And then when I-, in November last year, so almost a year ago now, I lost about-, I had about 50% hair loss on my head. So I decided to shave it all off. I felt much better after I shaved it off like it was liberating I guess, you know. It was just quite nice and it was just I had to do a speech at school the next day, completely forgot about that when I shaved my head. So I had to go in and like in front of the school and I had just my shaved head. It was just almost quite nice because everyone saw the new me in one go and it was just like, I took control of it rather than it controlling me. And then from that obviously I had little like stubble but that gradually disappeared by February.

Yeah, I think I appear older than I am. When I’ve, when I’m on a night out, and I look maybe a bit rougher than I am, as well. Saying that [laugh] having a shaved head’s rough, but some people seem to suggest that it is. Or it may be. Because I look almost quite hard, at times, compared to the young boyish hair look that I previously had, so. But obviously speaking to people has made them realise that it’s not the case, and think- don’t know. They acknowledge that I am different, or I look different, but- almost quirky. Some people don’t even realise that it’s alopecia, they think it’s a fashion statement or a choice of my own, and that it looks good in their opinions.

I missed lots of lectures and seminars and stuff. And yeah, so missing contact hours is quite detrimental sometimes. So I didn’t go. So yeah, I was missing out on quite a lot of the learning I suppose although there are resources it’s normally never the same as going to the lecture and learning it with the lecturer that you can ask questions to especially like the seminars as well incredibly useful environments to learn. So me not going to them was quite bad but I felt that I couldn’t go to them. Like, as I said before, I’d be arranging my hair kind of for ages before and like at some point I’d just give up in frustration and just be like, No, I’m staying at home today, not gonna go. Yeah, so it, in terms of other things like just general like essays or work deadlines that I had I wouldn’t say it sort of it affected too much because it was, for me, just the social side which was a struggle. Yeah, so yeah [laugh]. Obviously, as I said, the seeing someone about, at my university about it was really helpful and I think things were looking sort of up from there. Cos also sort of when you’re at university and you’ve missed quite a lot of lectures and seminars, you always feel like a bit like, Oh I’m not sure if I should go back, it’s going to look a bit weird like-, everyone’s going to think oh, she’s back. And, I don’t know, it just feels a bit strange to sort come back after a while of not coming to lectures and seminars but yeah, I think I did sort of come back sort of slowly ish and I did-, I did prefer being like at university and, you know, actually learning along with the lectures and seminars like my, my fellow students [laughs].

I like longer curly ones. My hair naturally was really, really curly. So I find it really weird with wearing straight ones. But it’s quite nice to be able to have like two at the same time that are similar, so you can be like ‘I’m going to straighten my hair today. And like no one knows any different. If you have like fringes, it kind of takes the thing away of having the line [points to scalp]. Because obviously sometimes it can be- if I pulled this all back, it would be really obvious that it’s a wig. Or to me, it would be, some people not so m- don’t pick up on it at all, but. Yeah. So yeah, a fringe tends to look better as well. Obviously they’re quite full, so most people just think- and when you get them, they’re really shiny as well, so most people think like ‘oh my god, she’s got really good hair. Or straight away it’s fake. It’s like things like lighting can make a big difference as well, so if you’re in a really highly lit place and it’s really shiny.

But speaking as a girl, I think you spend your life looking at all these beautiful like princesses and, you know, celebrities on telly that have got these long, luscious locks. And you just, and I think, well, having long, luscious locks, I used to have really long hair. Like I’ve always been used to being around, you know, having really nice hair. It’s finishing off your look really. And being around friends that have got, you know, nice hair. You just sort of associate like femininity with having thick, long hair and, you know, like you can swish around and whatnot. And like losing that you just, I just felt like, initially I just feel like well, I’m not like a woman any more. You just, you just don’t feel that you fit in to being like a, a girl. And it’s just harder to sort of match your outfits, you know. Like, you know, like nothing looked right bald. And looking at yourself in the mirror, like where do you finish your make-up? Cos I’ve got like a full face. Like it’s just little things like that.

People, some people seem to think that it’s more difficult for girls to have alopecia, which I feel it is sometimes. But girls have the opportunity for wigs more, more readily than males. So it’s almost impossible for us to hide. But I’m quite accepting of it now, so it’s not as much of an issue any more.

Why do you think it is that maybe females have the option of wigs more so than males?

The majority of wigs seem to be for long hair. And females in general seem to have longer hair. And also in terms of eyebrows as well, it’s easier for women to draw on eyebrows than it is for men, in terms of make-up and things like that, so. It’s, it’s easier for them to make it look more natural than it would be for a male’s eyebrows.

I change my style a lot depending on my hair, so sometimes, like if I wear my really crazy wig, my pink, blue and like purple wig, I’ll have more of a kind of bright, bubbly look and like sometimes I’ll look more sophisticated if I wear just a brown one, like wig, so I do kind of I do style my look according to my hair sometimes. So, I’ll y’know, depending on what-, I did that today, depending on what I was wearing, I was like, okay, so what wig would look good or do I just go with my short hair?’ And y’know, so, yeah, I change my look according.

Is that like make-up and jewellery as well as clothes or is it the-

Yeah.

whole thing? Yeah?

It’s make-up as well, make-up kind of, I’ll style, depends, so, if I have really dark hair, I might wanna go through like, kind of heavier like eye make-up look and everything. And yeah, I just change it.

But identity wise I wear a lot of wacky clothing, I love velvet and tweed and tartan and [coughs] stuff like that. I shop a lot of charity shops, I like to bargain hunt and vintage, vintage is just, [inhales] I love vintage, anything vintage and retro I have a lot of big padded jackets and stuff like that and bomber jackets and all sorts of things and creepers and Doc Martins, so many Doc Martins.

[Laughs]

I think clothing for me is very important it, it just is a part of me and a lot of people don’t understand that that I feel like it’s a way of me showing how I like to [gestures] design myself if that makes sense cos I can’t design myself with hair I do it through clothing. When it comes to make-up all I wear is eyeliner and mascara I don’t, I know there’s a lot of women out there that’s got alopecia universalis who obviously have no eyelashes, eyebrows and they wear fake eyelashes they draw on their eyebrows, you know, they put a lot of foundation on, I don’t, I just put on mascara and eyeliner, I can’t be bothered with foundation, it’s not good for my skin. My eyebrows, I’ve tried drawing them in, I look like a monster [laughs].

How come?

I came in, into the living room and showed my brother and he went No, no, take that off. But yeah, I don’t bother with makeup.