I had like every colour hair. I mean my hair was like how I express myself. But I guess that’s the same with like any teenage girl really. So I think that was what I found difficult because I’d gone from like blue to pink to red to purple to everything and then no hair. Like what do I do? How do I express myself now? But then I thought well I could express myself through having no hair, like that works too. I mean fewer people have no hair probably than have blue hair and pink hair. And I think I’d kind of just about grown out of the phase of dying my hair silly colours when I started losing my hair, and I was like okay, well it’s time to kind of stop that and grow up and just like be natural. And if natural is me not having hair then you know that’s, that’s me. That’s natural. And that’s probably going to shock people more than me having blue hair. If that’s what I wanna do then that’s what I wanna do. You know? And also just having wigs as well, I have stupid coloured wigs for when I wanna go out, I have like a lovely blue wig that’s like all mermaidy. And it’s just, it’s nice having that option instead of having to like bleach your hair and then put a colour on and then leave it on for 24 hours and then take it off. It’s, yeah it’s, it’s nice to kind of be able to, I find it easier to express myself which seems weird because it’s something that’s kind of taken my agency with how I look away from me. But it’s so much easier cos like it takes me like 30 seconds to just put a wig on and I’ve just changed how I look. So yeah it’s, I, it’s quite liberating, it’s quite nice.

So I’ve only used synthetics, so far. But I’m looking at the possibility of buying a real hair, a real hair one. And just from sort of trying one on at my hairdressers. She’s got a special wig clinic effectively where she sells and buys them in. But just sort of trying on a real hair wig in comparison to a synthetic wig. It’s amazing what the difference was like. So with its, for example, with synthetic wigs they’re a lot heavier and they’re a lot hotter and, than the real hair ones and also with the real hair ones, the fibres don’t let the hairs, they don’t, they don’t tangle as easily, so they just sort of, if you swished your hair it will swish instead of with this it kind of just stays and just moves a little bit [laughs]. So it all stays sort of together.

Yeah, well, I’ve never had a, I’ve never had a synthetic one. I’ve always just had human hair ones. But my human hair ones I wash about once every four to six weeks, unless I’ve been out and they need a wash. And then I often, I, I’m quite reluctant to sort of use heat products on them all the time cos I think like you can’t get them cut. You, I, I get them trimmed but I don’t g-, I can’t get them cut all the time. So I just tend to, I prefer my hair to be like wavy. So I like w-, wash it and put it in like a plait and then like in a bun and leave it to dry like that, just leave it to set. And then when I take it out, it looks really natural. So you can straighten them and stuff. And you can use the exact same products that you use on normal hair that you do on wig hair. But obviously I just, I don’t want it to look dry. So I just prefer to, you know, twist it and things and do things like, without using heat products. But they are really easy to manage. It’s quite handy to, to have like the hair, to put, put it on the sort of polystyrene head to style it as well. And you can always h-, make it the, the day before you go out. Which is quite handy. Because you can just put it on and you get dressed quicker. So that’s quite good.

Now I’m, yeah, going to go travelling, well, I’m still going to work and travel but maybe, at some point, if I get a good enough wig that can last me a longer period of time, then I could go on like a big trip. But, at the moment, the quality of them just doesn’t stay long enough for me to do like a big trip, so I need to have like, I need to be based somewhere, if that makes sense.

I mean I could carry my wigs around but I guess that would just kind of, it would be too hard to change them and things like that cos I need like overnight for my hair to like, for my head to settle with the tape and stuff up there. Cos it started getting, reacting to the tape after a couple of years so now I have to be a bit more careful and change them more regularly. So I couldn’t really go, at the moment, I couldn’t really go on a trip longer than two, three weeks. I mean I could, if I was in like a hotel or something I suppose, but yeah, just depends I guess but yeah.

How did it work when you moved from New Zealand to the UK, in terms of sort of did you bring over lots of your?

Yeah, I because they don’t really last long, I kind of have one at a time and cos we haven’t found a good enough supplier to buy bulk to have them in advance, we cut it pretty fine in between the wigs. Like usually it’s like got, getting really bad before I get a brand new one, so I brought one over or, yeah, I brought one over and wore one over and they were both brand new but they were really bad quality so I’ve been here I guess I think it’s five months now and they only lasted three altogether, like they were just really not nice.

So if people decide they definitely would like a wig, then they are available on the NHS. There’s a limit to two wigs per year. And you don’t get the full cost of the wig. Sometimes the patient has to pay a proportion of the cost. And what happens is, they have to be prescribed from hospital, the GP can’t prescribe them. So the hospital doctor, dermatologist, will fill in what’s called an Appliance Form. They give that to the patient or the parent and there’s a limited number of centres, places, that provide wigs, that work with that particular hospital. So they’ll advise on where to go to. They go along there, choose a wig and then the supplier will send the invoice to the hospital, so the hospital pays. The other limitation is that only synthetic hair wigs are available on the NHS. You can’t get natural hair wigs on the NHS. They’re quite expensive. And you do need to pay for those. I think you can get a proportion of the cost back from the NHS, but certainly not the full cost. But having said that, acrylic wigs are very, very effective. They’re very, very convincing. And the only problem, particular problem I’ve heard is that if they get too hot. So if someone’s, you know, gets too close to the stove when they’re cooking [laughs] you can sometimes get a kind of frazzling effect with the acrylic which you wouldn’t get with a natural hair wig. So obviously you have to be careful with it. But wigs, the acrylic wigs, are very, very good. And if it’s been well fitted-, not many people can fit children but, you know, there are suppliers who can do that, they can be very effective and make a huge difference to people’s lives.

I’m really lucky cos my parents can afford to pay for real hair wigs which is like a bit of a luxury cos wigs on the NHS are like synthetic and really horrible and like not nice to wear. But we found this guy who’s like ab-, it’s absolutely amazing. He’s just a hairdresser but he gets in these, a wig like this and it’ll just be like all long hair, like not cut, and I go and I just tell him how I want it cut. So it just like comes like this, all like, it’s all like real hair. And then so I can, it’s like I can pick whatever I want it to look like, and obviously, as you can tell, I just kind of generally try and get hair that looks like other people’s hair, like bog standard sort. You don’t want to like-, if you’re trying to like blend in you don’t really want to have like a crazy hairstyle. But yeah, it’s really nice. They last for like between six months and a year and I, yeah, it’s just really like manageable. You like just wash it completely normally and like hair-dry it and use straighteners, and it feels exactly like normal hair and, especially having the hair cut, I think like if you buy wigs from shops or like on the NHS they’re already cut into styles and they look a bit like wigs, if that makes sense. Whereas, cos I just get it cut like a normal person has a haircut it, again I think it just makes it less obvious. Which is like a massive luxury that I get to do that, cos it’s not like cheap.

Have you, like prior to this did you look into like the NHS wig schemes?

Yeah I think my mum always tells the story where, when I was younger, maybe when I got diagnosed, no, maybe when I was like a little older, I had this like wig from the NHS and then I just like went to school in it, and then like brought it home in a plastic bag at the end of the day cos they’re just like really horrible and itchy and like really uncomfortable. And then I think, I think I just wore bandanas all the way through. I think I just got a bit curious about it, and then we, we sort of went to this place in London that, that is kind of similar to the one I have now but just like outrageously expensive. But we didn’t know cos we didn’t-, there’s not very much of like, you’re just Googling, like it’s like hard to know like where to go, what to do. And then we realised that you didn’t have to pay that much money for them, like that was a thousands of pounds. And then we found this guy and I’ve been going to him like literally ever since I got one wig there, and then I’ve only ever been to him.

About a month, three weeks, I wash it. Which it is gross. Then every-, well every few nights I kind of brush through. If it’s curly, you’ve got to kind of just do it with your fingers, because otherwise it ruins it really quickly. And then put a spray on it before you go to bed, so it’s ready for you in the morning. If I had- say I went out, I’d always put like a conditioner spray into it, so it smells a bit nicer, it’s a bit fresher as well. Yeah. Washing it. It’s quite-, it’s one of them things that I learned to do gradually, so, through kind of default. So if you touch them when they’re wet, they tend to like get ruined quicker. So you have to like get it wet, you’re not allowed to wash it like you do with your hair, you have to just like swirl it in cold water. And then dab it with a towel. Then let it dry. And then put like conditioner on it afterwards. Yeah. Like it’s a bit weird when you wash it, when you literally say, Oh, I can’t come out, I’m washing my hair [laughs]. Because you can’t [laugh]. Because if you wear it, it tends to go- and you get it on your clothes or something, it’ll go horrible. So yeah, it does take a whole evening kind of to wait for it to dry overnight. So that way it’s, you almost have to like schedule it in [laugh].

So the synthetic hair wig you have to buy a synthetic shampoo and conditioner, or just shampoo if you want [laugh]. But yeah, so you just wash it in the sink with cold water. You’re not allowed hot water, hot water’s very bad for it [laugh]. So you just fill up the sink with water, some, yeah, a little bit of water. Put some shampoo on your hands and just rub it through. Soak the water through, soak the wig through the water and sort of rub it through for a bit. It’s really quick. It just takes like a minute or two and then just wash it, rinse it out and do the same with the conditioner. It’s really easy and then you sort of just, I was drying it up in like the shower. So just leave it there overnight and then just put it on the next day, comb it through and wear it the next day in turn. So I’d sort of wash it every two weeks which, I know some people wash it like every month but I was wearing it like almost every day so. It’s a lot less than normal hair. But yeah, between washes I also got a, I’m not sure exactly what it is, I think it’s a synthetic sort of hair spray thing. It’s just something to use like in between washes just to give it a bit more life almost, when it doesn’t really need a wash. So yeah, I was just using that in between washes and sort of freshen it up a bit. And yeah, other than that just combing it every day. I don’t actually have a wig stand. I was just like propping it up. And actually at uni, I have a sort of homemade wig stand that I made out of like a tissue box and plastic bags and a bottle [laughs]. So I was using that. Yeah. I’m not sure what else to say [laugh]. So that was sort of caring for it.

It’s kind of touch and go, like I can make it work but generally, the longer the wig, the easier to maintain and just I guess. And what, I mean what we’ve experienced mainly is them shedding. So the first few, the first few years, we had these wigs that were amazing hair quality. I mean they stayed amazing but the hair would just fall out after two months, so they’re completely ruined after two months, whereas the ones we’ve got at the moment, the hair stays in like they don’t moult at all but the actual wig material stretches and so they start like sagging down and being really uncomfortable and the hair quality isn’t great. So it’s kind of like that other one that was too expensive to have to buy one like every month and a half to two months, so it was kind of like now it’s, we’ve kind of got the, we’ve got the wig right. We just need to get the hair right. So we’re left slowly trying all the different hairs and seeing what one stays nicer for longer.